Writing for me has always been a really great way to process my feelings around my chronic conditions and diagnoses’. Cathartic, cleansing, curative even.
One exercise that I often do with clients is to encourage them to write a letter to their condition. To get it all out on to paper, perhaps in a journal. It can help us manage stress by understanding what’s going on in our minds. Sometimes we feel anxious about things or we’re feeling upset and sad.
Writing something down can be a healthy and intimate way to deal with your emotions about your condition and what that means. It can help you reflect back and see how far you have come and the skills that you have gained, the support that you have around you and the positive choices that you have made while managing your health needs.
It also makes it easier to see possibilities and choices going forwards.
Some reflection questions
What have I learned?
Who are my people?
Given the current circumstances, what will serve me best now?
What actionable steps can I take from this place to move me forward?
Today I am sharing a letter I wrote specifically to my neuromuscular condition Charcot Marie Tooth Disease.
Dear CMT…
When you first came into my life it was hard. Those were the darkest and longest two years of my life. I got up every morning and got on with the day to day but inside I was crying. The words progressive, neurological, hereditary, they shook me to my core. Questions spiralled around my mind; Why me? What would it mean for the future? For my little boy? Would I be able to have more children? Would it be fair to try?
In the beginning you stole my career. I couldn’t manage to work. I would dislocate as the bed covers lightly brushed across my knee, I couldn’t walk on grass without falling and having more dislocations, you made family days out impossible, you made life hard. You put me through two surgeries in a very short space of time and I was told that I would be a wheelchair user by my mid 30’s. Not solely your fault I know now that EDS had a part to play too but I didn’t know her name so you bore the brunt. It was tough.
I kept smiling on the outside but I inside I hated you.
We explored all of the options for expanding our family, we thought about adoption, considered an egg donor but preimplantation genetic diagnosis was the closest that we came to seriously considering a plan other than Mother Nature, but who are you to make our choice.
Two years after I first learnt your name our second baby came into the world, naturally. We were happy. I was meant to be a mother and it felt good. You weren’t done though we’re you? Making me go through major surgery with a young baby and a toddler. This time I never let it get me down, you weren’t going to beat me anymore, I had decided that I was going to win the fight.
So I researched all about you, I called your bluff. I took advice from the experts and I got stronger physically. I fell in love with Pilates. Learnt to to love Physiotherapy and slowly began to walk a little every day.
Strength for me wasn’t just a physical pursuit it came from within.
As time passed you have taught me so much. have taught me perseverance and patience, when things are tough they will improve. You have taught me think out of the box and find solutions when problems present themselves, the rewards can be so much more when you work harder for something. You have taught me to value what is dear to me and treasure it with all of my heart. And you have taught me not to judge others because you never know their story. Self compassion has become my medicine. You have made me a better person.
You weren’t done with us though we’re you? You didn’t want to give us a break? When our daughter was born it was obvious that you were part of her too. We were formally told after she had to endure painful Nerve Conduction Studies just before she was two. This time I didn’t hate you but you made me sad. So sad that I couldn’t speak for a week, so sad that the food just went round and round in my mouth till I finally swallowed it down.
Why her?
Then EDS formally came into the picture too, I didn’t grieve this time, you had taught me to cope. Our beautiful, determined daughter had taught us joy, we knew how to paint our own rainbows, we are a unit, strong, together and we are armed.
We understand what we are dealing with so we can prepare for her future. We won’t let you catch her unawares in her 20’s. We can fight your symptoms because we know the damage that you can do first hand. She will be her strongest best self.
You have taught me to fight for that care for her, for all of us, to practice gratitude, to negotiate, to say thank you when people do their jobs well, to be assertive when they don’t, to learn the law, our rights.
You have taught me that strength does not mean that I have to fight every day, fighting just adds another layer of resistance that makes everything harder. My strength is deep within me now. A knowing. A heartbeat. My strength also comes from being vulnerable and letting my guard down, without you I may not have learned that was safe. My vulnerabilities are so welcome now.
I am empowered.
I thank you for that.
You have also taught me to give back. I have been on a journey through diagnosis to the point where I am now and I survived. I am in a much better place physically, mentally and emotionally than before I ever knew your name, you have triggered that change in me. I am stronger. I am thriving… even with you in my life. I now use this to help others who may just be at the start of their journey, perhaps with a condition that has come into their world or when one of life’s storms have hit and it has knocked the wind from their sails. Because we are all stronger together.
Like any relationship I have got to know you and that has been key to living well with you. But most importantly I now know myself : what I love, what I value, what brings me joy, who I adore, whose energy I love to be around and what I want for my future.
I can’t change my condition but the choices and decisions around the rest of my life are mine, I get to choose how I react to the situations around my health. That power is mine and you can not take that away. My focus is not on what I can’t do but what I can and how I can adapt things to be able to still take part, if I want to. My out of the box thinking has expanded ten fold – and I love that you have given that to me.
I’m sure that you will always try to test the boundaries but I am prepared for our future together.
Writing can help you to manage stress by understanding what’s going on in your mind + can be a healthy + intimate way to deal with your emotions about your health condition and what that means. I have always found the process extremely cathartic : here is a letter I wrote to my Charcot Marie Tooth disease.
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It is a space to be you, to be honest that you want more than this, to be honest about not knowing how to start. A place where we can lift each other up and support each other.
Where you can share your story and where we can inspire each other with our wins.
It’s about understanding that life can be tough but also that we can do hard things. And, about recognising your own unique superpowers!
Narrowing this list down to just three things that help me manage my chronic illness has been tough. I’ve tired not to choose the top three things that help me manage EDS or CMT or even look at it through the eyes of the main symptoms but more through the lens of my chronic conditions as a whole and how they play out in my life everyday, so that they may help you no matter what chronic condition you may have.
#1 PACING
When I checked in to the rehab ward at Stanmore hospital nearly nine years ago pacing was my enemy. I was resistant beyond belief and had no idea how it would fit into my life let alone the impact that it would have on managing my chronic conditions.
This extract is taken from a blog post back then:
“How would I ever be able to pace my days when I had so much to do and so many people relying on me? How could stretching while standing in a queue in a shop help alleviate pain later on? We had to colour code all our activities over a week, green – easy, amber – a challenge and red – hard work. The task was to spread out our ‘red’ activities over a day, with no two red activities next to each other. The principle was fantastic but all my red activities were between 3pm and 7pm when the children are home from school and we do homework, reading, dinner, clubs, bath and bed. The whole evening becoming a blot of red, not because each individual activity was hard in isolation but the sheer amount in a small space of time. How could I spread them out? Sorry kids no dinner tonight, mummy can’t have another red activity!“
Now pacing is something that slots naturally into my days without me even having to think about it. It is as natural to me as brushing my teeth in the morning or making a cup of tea. In fact sometimes I forget my cuppa… I never forget to pace. It is a non-negotiable when it comes to the management of my chronic conditions.
I’ve lost the martyr role where I believed that I was responsible for everything and everyone… and then felt bad about it. Everyone in our family is an empowered individual that can achieve anything that they put their mind to.
I have retrained and have a career that I have built solely around my health condition, helping others manage theirs – BONUS!
And even my working weeks have regular down times and schedule that works to three weeks on one week off pattern, to recharge.
And today, knowing that I am tired I am binge watching Netflix in-between writing a blog post and enjoying the garden and fresh air because that is what my body and energy needs now. With no guilt.
But the real contrast is in the things that I fill my days with. Back then it was FULL of things that I had to do or should do. Self-imposed constraints placed on myself like punishments. That if I allowed time for fun and play it would be weak.
Now fun things are an absolute priority in my life. Scheduled in my diary like appointments so that they can no be missed. Time away with the girls, dinner out, breakfast with my mum, a spa session with my daughter. They refuel me and fill me full of positive energy. The roots of joy and purpose firmly planted once more in my life.
I’d lost who I was for a bit and with that EVERYTHING felt hard. Including pacing.
Remember, pacing isn’t just about doing less it was about spreading things out over the day so that I can achieve more. In the process I stopped feeding into that boom bust cycle where I would inevitably push, push, push CRASH! Freeing up space and energy for things that light me up and re-fill that energy bucket finally getting the balance.
You may also want to think about pacing to help you manage your condition if:
You often push through pain, symptoms or tiredness
When you have energy try to get everything done then pay for it later
Are scared that you will flare your symptoms so do less
the top three things that help me manage my chronic illness long term
#2 MINDSET
There was a lightening bolt moment when this changed for me. Outside Great Ormond Street Hospital, on the pavement on Guildford Place.
We had just had an appointment with a top paediatric consultant as Rubie was still not walking at 18 months and when she pulled to standing (she was really trying), her feet would often be facing the wrong way. She was wobbly too. Her physio agreed, this appointment was a good call.
But the outcome that day – she’s within normal limits.
That’s when the switch occurred.
No more stories. No more doubts or fears. Just this deep inner knowing and trust in myself. I became empowered in that moment and took control of the situation and the narrative around it. This journey wasn’t going to be without its difficulties, this very appointment had proved that, but it was my job to show her how to live her life well and advocate for everything that she needs with confidence and humility.
And from that day forward that is what I have done. No more martyr, why us or victim playing out. Just honesty when it’s hard and and making sure that I keep doing the work around my thoughts so that my past is not projected on to the kids or the future.
Mindset is something I always work on. And has been a game changer when managing my chronic illnesses.
It is super powerful for deep thinkers to question their thoughts, who often think as a way to avoid actually feeling. But equally it can be really powerful for people who get lost in their emotions.
Both of these extremes are often seen in patients that are recently diagnosed or dealing with the overwhelm of symptoms, so mindset work is a win, win.
Mindset work can help you in any area of your life but is fantastic when:
where you have judgements that limiting you
where your inner dialogue is taking you out of the game and causing you to feel stressed
when you get into habits of blaming
excuses or complaining
if you are a worrier and get stuck in negative thinking
(This photo was taken on the very pavement outside Great Ormond Street Hospital, on Guildford Place, nearly 11 years after that first appointment. Directly opposite is a cute little Italian that we try to visit every time we have an appointment at GOSH. Even though at the time that appointment felt like a fail, it was the best thing that ever happened because it changed how we showed up for her and for ourselves every day since. There is learning in everything people.)
#3 ADVOCATE LIKE A MF TIGER
Number three on my list has been very hard to choose. There are many other things that I feel have been important to me : acceptance has been at the heart of everything and absolutely deserves a mention here, as does self-compassion. The way I treat myself has been so important. And while encompassing everything that I do and how I show up in the world I really want to show you three clear management strategies.
My relationship to pain and my body… another biggy, worth exploring another day for sure but this week I have literally spent every single day doing my number three in some shape or form for me or one of the children.
Advocating.
Monday
On Monday this began on our way to Great Ormond Street hospital where I spent (what felt like the whole journey) trying to sort out two repeat prescriptions. One that had not been processed by the POD (prescription ordering, direct) service, despite a confirmation email and the other that had been rejected by the GP due to a med review, but no one had told us until we went to collect it from the pharmacy and then chased it!
Followed by a very lengthy clinic appointment where I tried to tie up National and local services for the year ahead and get everything in place for health and education that needed to be before we left.
Tuesday
Tuesday saw booking of COVID jabs (straight forward) and flu jabs, not so). Despite my son and I falling under the category ‘complex neurological disorder’ on the NHS website the receptionist cannot authorise and left a note for the GP to sort out. I assumed this would be fine as we were always eligible when we lived in London.
Then I get a call from my daughter’s best friend, she is really upset that Rubs has been stopped by a teacher using the lift in school, which they are authorised to do) and instead of asking her why or being curious about what could be going on for her Just point blank tells her that she is not disabled. When she explains that she is and invites him to look at her records he insists that she is not disabled. An argument ensues resulting in, ‘well you’re not visibly disabled… it must be mental’.
My daughter and her amazing side kick handle it perfectly, report the teacher and reinstate the lift pass and telephone me enroute to their next lesson!! Advocacy in action, right there.
In my opinion an opportunity missed for the teacher because both girls are extremely bright and articulate young ladies, and he actually could have gained a lot from the interaction.
Wednesday
Fast forward to Wednesday morning on the telephone to school advocating on my daughter’s behalf.
What I know is important to me is for her to feel seen and heard and she didn’t in her interaction yesterday and that is what frustrated her the most. That when she tried to explain her teacher chose not to listen, this is what upset her the most. I needed to communicate that for her.
All children people with invisible disabilities should be treated respectfully and not have to prove that they deserve to use the accommodations that have been put in place to support them, or that they have to look a certain way either.
I could have a heart condition, chronic pain, renal failure, myalgic encephalomyelitis. I could be using splints on my legs, or a prosthetic limb… but under my trousers you could not see. Does any of this mean that I do not have a disability.
Ironic, that at GOSH the day before the team were praising her for using the accommodations that were put in place for her at school, despite her disability not being visible often. And the very next day she was challenged for doing so.
In any situation I look at what can be learned.
I will continue to give Rubie the tools to advocate for herself. The language, the right people to talk to and play out the ‘what to do if people don’t listen’ scenarios with her also.
I believe that there a huge opportunity here to educate on what an invisible disability is and how students can better be supported in school by all staff and education for students. Default should be set to curiosity not judgement.
It also highlights a conversation that needs to be had around sharing of pupil records amongst staff, how school ensure that these are read and procedures for using the lift. This is especially important as this was one of her teachers and he has access to and should have read her records.
I have confidence that the school will follow these points up, and if not, I will be sure to as it will be of benefit to all the students at her school.
But I also secretly wish that I didn’t have to.
Thursday
My Thursday morning has been spend so far taking Rubie for a blood test and chasing the flu jabs at the GP. They have decided that we don’t qualify, with no feedback. So now I will have to put back on my advocation pants and show the GP that we do and which criteria that we both fall under and why.
A 2 min google search in the waiting room with the names of our conditions pulled up numerous government websites to do just that! but it will probably mean another 30 min phone call explaining and educating tomorrow morning to actually sort it all out – which is a bloody waste of a GP’s valuable time… and mine.
Friday
I have a foot and ankle clinic appointment following last year’s surgery. But mostly I hope to get a follow up from school saying that they will review policy, have planned an extensive education programme around invisible disabilities for staff and students and our flu jabs can be booked without having to prove our medical conditions.
My Hope
I dream of a world where you don’t have to prove and re-prove your disability or health condition to those that actually have your records and should understand and be there to support you.
Until then, I hope that the people on the other end of the telephone lines, manning reception desks, booking appointments, teaching my children – just listen with and open mind and curiosity. And when mistakes are made, they are helpful and do their best to help to rectify them.
We are all human and call it wrong sometimes, but it only gets better when we admit that step up and learn from it.
That would actually change everything, until then we need to learn to step up for ourselves and those we love to help to manage our health conditions and needs.
Update
As of writing this Rubie’s school have dealt with everything perfectly (as I imagined that they would). Communication as always is clear and open. Rubie is happy and it seems that all of my points have been considered and followed up and the SENCO is calling this week to discuss further.
As humans we can learn from everything and organisations are no different. If they choose to it makes them stronger, more resilient, autonomous.
My GP surgery has refused to provide me or Alf with the Flu vaccination three times now despite explaining the criteria that we fall under clearly.
Last night after getting of the telephone I did think that I would just pay for it, it would be easier, right?!
But this morning when I woke I thought how can I publish a post about advocating and then take the easy option. I have now downloaded the proof from leading charitable organisations the NHS website, (including the green book that the GP’s use to make these decisions) and telephoned CMT UK.
My next job is to forward this evidence to the practice manager to be reviewed… again.
Explaining to my doctor that our conditions fall under the category ‘chronic neurological disease’ or ‘hereditary and degenerative disease of the nervous system’ and why, and why our symptoms will become exacerbated if we catch the flu. Even though a) they are medically trained and, b) we were both in the extremely clinically vulnerable category during COVID.
What Can you do?
When I advocate, I often take a breath, a pause, sleep on it if you can. (Especially if it is an emotionally charged situation).
Ask yourself…
What can I learn?
What do I want to have happen?
How can I communicate that?
Is there any information I need from them?
Is their any information I need to share be specific)?
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Chronically Empowered Women is a community of women who have chronic illness.
You may feel like no-one understands what its like living with your chronic illness or worrying everyday about your kids. That you are hanging on by a thread or the future may feel a little uncertain. In the group we get that.
You value life and want to be the best version of you. To manage your symptoms effectively so that you can live your best life.
In the community we will be having real, open conversations about how you can do this. With my experience of living with multiple chronic illness’ and raising kids with CMT, EDS, PoTS and ME. I know that the struggle is real. I will be sharing guidance, challenges, my personal tips and real life stories to remind you of how this can become a reality now!
What if the thing you really want is hiding right where you are afraid to look?
This week my daughter turns 12. I am not quite ready to accept that she is ALMOST a teenager – my sweet little girl is turning into a bright and sassy young lady.
For a birthday treat we took her and a friend into London to see the West end production of Disney’s Frozen.
My kids grew up with this movie, the songs embedded in me like a familiar, comforting tune playing in the background – and rather than the movie more recently the Just Dance version has become a firm favourite. It takes me right back to her prancing around the front room all dressed up and singing at the top of her voice in her princess outfits : innocent, carefree.
We’ve all seen the film we all know the plot but have you ever thought about it… really.
I’m going to give you my take on what Disney’s Frozen taught me about mastering emotions and coping with life’s challenges. You may be surprised to discover that that the key to unlocking the thing that you deeply desire may actually lie in that last place you want to look.
Conceal, don’t feel
It begins when Elsa accidently hits Anna with her winter powers, Anna’s memory is wiped of the incident and from this moment Elsa hides herself and her powers from her sister. Early on Elsa’s is given a pair of gloves, as she puts them on her father tells them they will help. There is a pivotal line at the beginning of the performance that forms the backbone of the show from here on in.
Father: “conceal it.”
Elsa: “Don’t feel it.”
Both: “Don’t let it show.”
How often do we follow this advice in our own lives?
Feeling sad? Conceal, don’t feel.
In pain? Conceal, don’t feel.
Feeling fatigue? Conceal, don’t feel.
Stressed out and overwhelmed? Conceal, don’t feel.
Struggling to get your head around a diagnosis? Conceal, don’t feel.
Whenever we experience what society would deem to be ‘negative’ emotions we are conditioned to pop them in a box and get on with things, to put on a brave face, to not show our perceived weaknesses to the outside world.
“Conceal, don’t feel, put on a show, make one wrong move and everyone will know.”
We have been taught to think of emotions as good or bad. But feelings are just feelings and all emotions are part of being human. Negative emotions aren’t harder to feel, it’s resisting them that’s hard. We develop habits NOT to feel what we perceive to be the bad or negative emotions creating resistance, ironically taking the energy from these emotions with us until a situation triggers it again and it keeps piling up inside.
Fear
Elsa was tormented by fear, scared to hurt her sister and of not being able to control her powers, the fear had gripped and controlled every part of her life and had built up like a tornado inside her over the years of pushing it away.
Anna knew this was driven by fear but she just didn’t know why.
“Why do you shut me out? Why do you shut the world out? What are you so afraid of?”
Fear wasn’t working for Elsa, but she did not know another way to be. Like most of us we are just doing the best we can with the resources that we have at the time. When we know better…. we do better.
Hurt
Coronation Day proves too much for Elsa after showing her powers she flees to the mountains.
She is hurting right now.
What do we do when we are hurting? We hide away, we shut ourselves off, we avoid, we feel sorry for ourselves, we feel angry we wallow in self pity for a bit. Sometimes we come out of it, sometimes we don’t.
But, it all comes back to the underlying fear that she feels. She is afraid of what people may think of her, that they will reject her and of what she may do. It is easier for her to hide away than to face up to what she is scared of.
Familiar?!
Here in the mountains is where we have the famous song “Let it go” I’m sure most of you know the words by heart.
It may seem that on one level Elsa has finally embraced and accepted who she is. But while running away has made her fears and problems seem smaller the internal storm is still raging inside her.
Avoiding our feelings just postpones things, it’s what we do when we are not ready to face up to the hard stuff.
“Let it go , let it go, can’t hold it back anymore
Let it go, let it go, turn away and close the door
I don’t care what they’re going to say
Let the storm rage on
The cold never bothered me anyway”
“It’s funny how some distance, makes everything seem small
And the fears that once controlled me, can’t get to me at all”
Ultimately all that Elsa is doing is running away from her problems instead of dealing with them.
Anna comes to the ice castle in the mountains to find her sister, Elsa thought that she had solved everything on her own by running away and is shocked to know that Arendell has been thrown into an eternal winter but she just can’t bring herself to help, accidently striking Anna again but this time in the heart. Elsa conjures up a snow monster to send everyone away from the palace before she can hurt anyone else.
Pushing everyone away because she does not know what to do.
Eventually captured Elsa is told by Hans that Anna has died because of her. She uses her powers to break free and makes her way to the frozen river, to Anna.
Elsa is overcome with grief and remorse and finds that in the midst of these emotions the blizzard actually stops. In that moment Elsa realises that she can control her powers.
“There is no fear in love, but perfect love casts out fear.” 1 John 4:18
A real love for others will chase those worries away. The thought of being punished is what makes us afraid. It shows we have not really learned to love. Perfect love was the antidote to fear.
All emotions are part of being human, not good or bad and our emotional freedom lies in accepting, allowing and releasing our feelings not stuffing them down or drowning in them.
Once again Disney, in my opinion hit the mark with this one.
Lessons in my own life
When I was first diagnosed with Charcot Marie Tooth disease and subsequently Ehlers-Danlos Syndrome I fought so hard to be strong. I was scared and my strength became my protection.
It felt like I was fighting every day. I did not let my guard down because I was scared that if I did it would be a weakness and someone may see or I would not be able to cope. I thought that fighting was the only way. That I had to have control over everything that I possibly could as everything felt like it was out of my control.
On the outside it seemed like I had everything sorted : the perfect family, life, children, car. I did have all these things… my family especially are bloody amazing but these external things were not what I needed.
While to the outside world our life was perfect (and in many ways it was), underneath it all felt like I was struggling to stay afloat. Because ultimately fighting is tiring, hiding is lonely, being strong and pretending to have it together all the time is not real.
I had built my Ice castle around me and it was beautiful and strong and I did not let any of those messy feelings out for fear the walls of my castle may crack and it may all come tumbling down.
BUT
The strength that I so desperately was striving for was not found in the depths of the fight or inside the walls of my heavily fortified castle.
The strength I needed could only be found when I was ready to trust and embrace peace, the very place that I was scared to go.
My strength today, is not found through putting my gloves on and getting into the ring every day ready for battle. It is found in the quiet knowing that I can handle anything that life throws at me. That I have it covered. Peace has opened the aperture to see the bigger picture and the possibilities available to me to face all of life’s setbacks.
Fighting only narrowed that lens.
It’s often the last place that we are willing to look, and the hardest one to go to, that holds the key to everything that we desire.
If you want to find true connection and love you will only find it once you’ve embraced you’re fear of loneliness.
If you want freedom you will find it once you have embrace feeling stuck.
If you want to feel worthiness, embrace the part of you that feels unworthy.
To experience authentic confidence you have to embrace self-doubt.
To feel secure you must know insecurity.
Just imagine that you have been hurt in a past relationship, you are so scared of getting hurt again so you are guarded when dating, never really opening up, just in case you get hurt again. What you really desire is love but until you are willing to be vulnerable love will never really be open to you. You have to embrace your vulnerability to find what you ultimately desire, true love.
What if the thing you really want is hiding right where you are afraid to look?
So queen, my question to you, what are you willing to embrace in order to get what you desire? Are you brave enough to go there and set yourself free?
I have written this article after being asked to share my thoughts on how self compassion can help with loneliness for the Podcast 'How To Be...' by the amazing Suswati Basu. What self compassion means to me Self compassion, put simply, is the ability to have self...
Let's face it, for all parents in the UK this January plans will have changed. The further restrictions placed on us all by the latest COVID lockdown means the nation once again will be faced with our children accessing learning from home. Some of you will have...
What Is Imposter Syndrome Have you ever felt like you don’t belong? Like any second now your friends or work mates will discover that you are a fraud? Do you ever think that your successes are attributed to luck, rather than our own skills or qualifications? Or, do...
Last week I spoke about Imposter Syndrome, you can read about it here - What is Imposter syndrome and Do I have it? The first step in overcoming Imposter Syndrome is to acknowledge what you're feeling, and why. Start by keeping a journal or writing down your thoughts...
I fake my EDS symptoms all the time. Every day. For as long as I can remember. It is second nature, it's why I am so good at it. Now I don't mean I'm faking the symptoms of my condition, making them up, exaggerating them, they are very real to me and they are...
Have you ever felt like you don’t belong? Like any second now your friends or work mates will discover that you are a fraud? Do you ever think that your successes are attributed to luck, rather than your own skills or qualifications? Or, do you try to keep more and...
7 golden steps to manage your chronic pain I have lived with pain for as long as I can remember, it’s now chronic, it’s never going away. I have Charcot Marie Tooth disease, a neuromuscular disease that affects the motor and sensory nerves to my arms and legs, you can...
Acceptance in human psychology is a person's agreement to the reality of a situation, to be able to recognise a process or condition (in this case a chronic illness or health condition) without attempting to change it or protest it. In simple terms getting your head...
The A-Z of Ehlers-Danlos syndrome (EDS). Simple, jargon free and real. From adrenaline highs, mast cells and slipping rib syndrome to the zebra mascot. If you have EDS or know someone that does these thing will sound familiar. But, do you know everything there is to...
Does it make me special? One in 12 Million... the odds of having both hypermobile Ehlers-Danlos syndrome (EDS) and Charcot Marie Tooth Disease (CMT), based on current prevalence! Some days it feels pretty special, let me tell you why. I’m not going to dwell on the...
Chronically Empowered Women is FREE private Facebook community of women who have chronic illness… and there are loads of us with EDS!
You may feel like no-one understands what it’s like living with your chronic illness or worrying everyday about your kids. That you are hanging on by a thread or the future may just feel a little uncertain. In The Tribe we get that.
You value life and want to be the best version of you. To manage your symptoms effectively so that you can live your best life.
In the community we will be having real, open conversations about how you can do this. With my experience of living with multiple chronic illness’ and raising kids with CMT, EDS, PoTS and ME. I know that the struggle is real. I will be sharing guidance, challenges, my personal tips and real life stories to remind you of how this can become a reality now!
I bet if you have a chronic illness, especially one as misunderstood as Ehlers Danlos syndrome (EDS), someone somewhere has given you a piece of well meaning advice that hasn’t quite landed.
As you will see, even from well trusted medical professionals.
Unless you know someone with Ehlers-Danlos syndrome (EDS) or Hypermobility Spectrum Disorder (HSD) or have one of these conditions yourself you have probably never heard of them. Although the most common type of EDS, hypermobile type is not a rare condition, many medical professionals have very limited knowledge from their training, particularly about the multisystemic nature of the condition. Other professionals, perhaps in the education system or the local health services may never have come across EDS/HSD before at all.
So as patients and parents of patients we have come up against so pretty funny opinions from professional about EDS. I don’t think in most cases that these comments that people have are supposed to hurt or do harm, sometimes people simply do not think before they speak. Often, people want to help, are trying desperately to help but due to lack of understanding they don’t quite get it right! And sometimes they clearly don’t get it at all and should probably keep their thoughts to themselves and seek some proper advice or education from someone who does.
A little while ago I was having a challenging EDS mum day I needed to know that I wasn’t alone in all of this so I asked some EDS friends and parents a question “What is the one thing that someone has said to you that has been so ridiculously stupid it has actually made you smile?”
I had an overwhelming response, some of the 95 things NOT to say to someone with EDS will make you laugh, others will leave you speechless or shaking your head in disbelief. What they will make you feel, I hope, is that you are not alone in this journey.
Please feel free to add your own in the comments. I’m sure that you will relate?
Sarah 🙂
1. Headteacher: “We need a date in writing from a consultant when your son will be well”.
Sarah Wells
2. Consultant: “We know she has hEDS but we don’t like to label them, is it because you want to claim benefits?”
Vicki Mayor
3.“EDS is a positive thing as you can be a great dancer or gymnast”.
Kirsten Crossman
4. CAMHS therapist: “The Doctor upstairs says Chronic Fatigue isn’t part of hEDS”.
Julie Mcgrory
5. A Paediatric Consultant Gastroenterologist told me that of course EDS doesn’t affect the gastric system and I was stupid to suggest it did.
Charlotte Saunders
6. GP Appointment: examination of my daughter says “Well your very bendy!”
Grainne Sanchia Watts
7. My daughter’s GP (not her GP anymore needless to say!) when she was being denied a diagnosis and we wanted a second opinion, told her “Only people who are pretty much contortionists get referred to Hypermobility clinics”.
Tanya Beechey
8. Paediatric Consultant – “Don’t worry about it because you will grow out of it when your older”.
Kaz Temple
9. Last night at a college open evening, we explained the condition and ask about support, they told my son to practice walking across busy roads from now until September as they were sure it would help because (mom) is overprotective taking him to school by car.
Eleanor Speed
10. Put in writing by paediatric rheumatologist: “Has EDS III but at least it’s not a serious one”.
Sandie Reid
11. Rheumatologist to my 15 year old “You don’t HAVE to click your joints the pain is just imaginary, if you go off and do something else you’ll soon forget about it!” Yeah right….. Lol
Deb Wood
12. (Otherwise lovely) GP to me after reading report from rheumatology/genetics diagnosing daughter with hEDS: “No I didn’t mean this kind of thing; I meant did rheumatology think she had any REAL problems?”…
Anonymous
13. This one was said to me not my kids by a rheumatologist: “EDS doesn’t cause pain and POTS is imaginary pushed through by an overly excitable Dr Gall!” I honestly just sat there open mouthed!
Kerry Brown
14. “Don’t over medicalise her condition”, from Paed Consultant.
Kirsten Crossman
15. “POTS is just caused by inactivity & de-conditioning nothing else”.
Kirsten Crossman
16.“You don’t look like you have EDS”.
Hayley Airzee
17. Oh and the GP “You know EDS is rare don’t you?” As if being ‘rare’ means she couldn’t possibly have it! Haha. x
Deb Wood
18.“It’s all in your head”.
Tasha Whitmore
19. Paediatric Consultant: “Go home and eat curry to manage your constipation”, to my child with dysmotility.
Julie Mcgrory
20.“You need sectioning, it’s psychosomatic all in your head”. When my bladder, bowel and digestion failed they started to listen. X
Louise Pearse
21. A psychologist said…. “She doesn’t have EDS, she was seen dancing all around the ward by the nurses”.
Anonymous
22. Psychologist: “Stop looking for a medical solution to your problems.”
Chris Watson
23. Unconvinced rheumatologist to my daughter’s observation that she had met someone else with Functional Neurological Disorder: “You should choose your friends more carefully”.
Chris Watson
24. Social worker to student support: “Do you have a risk assessment for pushing R in her wheelchair in icy weather?”. One week later, RISK ASSESSMENT FOR ICY WEATHER, “In icy weather everyone involved in looking after R should take extra care”. The list is endless
Chris Watson
25. Saw optician as daughter’s eyes (which are 90% made of collagen) had deteriorated and reminded her of EDS history only to be told “Oh is that like a virus or something that will be fine in a couple of weeks?”.
Anonymous
26. Paediatrician told me “Ignore her in pain, distract her and feed her fish fingers”. 2 years later she was diagnosed JHS 6/9, global weakness, had orthotics, physio and hydro to name a few.
Caroline Bailey
27. I had a doctor tell me my shakes (which I now know is a benign tremor) was because “I had Irish ancestry and they had it hard during the famine!”
Wendy Marsh
28. “You can’t be in pain as you can move more than most. Here’s some antidepressants”.
Elaine Wyatt
29. “You can’t have EDS your skin isn’t stretchy enough”.
Kirsten Crossman
30.“Just before we get started, I don’t actually believe that EDS type three exists. The others but not type three.”
Sarah Wells
31. Only had one comment from a GP which was: “How did you manage to get an appt in alder hey, he isn’t sick” in reference to the paediatrician sending him to the rheumatologist there.
Naomi Bannaghan
32. Rheumatologist to my 15 year old “You don’t HAVE to click your joints the pain is just imaginary, if you go off and do something else you’ll soon forget about it”! Yeah right….. Lol
Deb Wood
33. Unconvinced Rheumatologist to my daughter’s observation that she had met someone else with Functional Neurological Disorder: “You should choose your friends more carefully.”
Chris Watson
34. Oh another one to me rheumatologist: “I can’t see why the depo contraceptive injection is making you sublux more or give you more pain.” Baring in mind every time I was pregnant and through puberty I was suffering badly.
Elaine Wyatt
35. Orthopaedic to my daughter after a trampoline injury at school and the cold left her with mobility problems: “1) You didn’t dislocate your hip, you would have had to be hit by a car! 2) Stop resisting me, I know you can lift your leg and 3) You can’t have hydrotherapy today – you will drown!” this was ALL part of ONE CONVERSATION same day and he denied saying all of it at the CIN meeting!!!
Anonymous
36. I was told by a specialist hypermobility physiotherapist that: “Of course your hip isn’t dislocating – you wouldn’t be able to cope with the pain” 🙄
Charlotte Saunders
37. How about “I really don’t think your joints sublux as you would be in much more pain” 😫
Sandra McCallum
38. Health visitor: “I don’t think there’s any problem with her I’m more inclined to think child abuse and/or poor parenting… oh and her university goals? I mean really I think dole queue or wiping bottoms is more apt don’t you?”
Nybee Carter
39. I had been explaining to a physio about my then 2 year old waking in the night screaming with leg pain, limping and getting swelling at her joints… She then said to me “Do you think that maybe she is copying her big brother because he has joint problems?!” I replied well if she is, she needs an Oscar to perform like that, especially at 2am in the morning. x
Kate Emery-Burns
40. From a cardiologist who wasn’t even my consultant the nurse just needed an ok for the tilt table. The consultant walks in and says oh is this the lady with eds. Looks at me all strapped to the table……… WELL you haven’t got EDS you’re not skinny and lanky!!!!!!!!!
Katarina-Gabriella Leake
41.“You are being bullied at school or controlled at home!!” – that was fun my normally gentle daughter told her where to go in no uncertain terms 😂
Wendy Marsh
42.“He’s not hypermobile – he only scores a 4 on the Beighton score.” (He’s an 8 and professor Grahame laughed because the only non hypermobile joint he could find was his toes).
Jennifer Bear
43.We got a score of 10 from our knowledgeable rheumatologist which I thought was pretty impressive.
Chris Watson
44.“We are going to discharge you because there’s nothing more we can do for your 8 yr old son and you don’t want too many professionals involved do you!!!” Said his paediatrician. I mean honestly. The boy is 8. Just because he doesn’t know how to support him.
Annelisa Neilson
45. The OT left a PenAgain pencil and a writing slope for my son then in year 2 to help him as his fingers and wrists were super bendy. After a week we went in to find the teacher had taken both off him and was going to send them back. Her reason, “the slope takes up too much space and his handwriting hasn’t improved at all so it was a waste of time”.
Naomi Bannaghan
46. Then there was my GP trying to refer me to a cardiologist for POTS as basic sit down stand ups in GPs office was very positive. The cardiologist said “They don’t accept referrals as POTS isn’t real.” So a rheumatologist decided to write in a report all cardiovascular events investigated and negative.
Elaine Wyatt
47. When I mentioned to my child’s rheumatologist about the new heading “hypermobility spectrum disorder” which was met with a blank face and the rheumy said to my child “Oh your mum even has a new name for what you have”.
Erin Devane
48.“I’d like to discount your previous diagnosis of HEDS and POTS and start again from scratch, looking first into Chronic fatigue syndrome! Because I think those diagnoses are questionable.” Paediatrician talking about my 14 yr old daughter who was diagnosed by Prof Grahame and since has had it confirmed by a further 4 consultant specialists and numerous OTs, Physios, A&E staff etc!!! Didn’t make me smile though, it made me cry for 2 days!!!
Katy Pascoe
49.Hospital registrar refusing an x-ray for a dislocated knee because if it was dislocated then her leg would be straight not bent as a person automatically straightens a joint when it dislocates. He then offered to pull it straight cos it was just cramp!!!!
Rebecca Jayne
50. Paediatrician: “You have a healthy child…stop looking for answers”. ….while my child held a puke bowl, had vomited just before the appointment, had a rash, had all over pain, couldn’t eat, couldn’t sleep and was diagnosed with shingles the NEXT day (after a visit to an acupuncturist…me NOT stopping to look for answers!!)…
Erin Devane
51.“All children are hypermobile”.
Wendy Marsh
52. I had a SENCO tell me that my son “Couldn’t have an EHCP because they don’t cover health issues”… umm I thought that was why it was called an Education and Health Care Plan????
Charlotte Saunders
53.“Don’t you think you daughter looks rather Downsy?” …. said when my daughter was 8 month old by a neonatal consultant at a check up !! I think my response was “err no… I think she looks rather daughtery but you sound rather nasty”.
Victoria Searle
54. Another time, while my daughter was writhing in pain with her stomach a doctor said “There’s nothing wrong with you hop off the bed, you can go home” when we insisted she had a scan, turned out she had a cyst the size of a tangerine! That was one embarrassed quack!!…. He was sorry I suppose but at that stage we had met too many doctors who had been rude and condescending.
Wendy Marsh
55.Don’t forget how he adjusted the seat higher before I jumped down 😂
Eleanor Lydwina Marsh
56. Orthopaedic surgeon to my 14 year old daughter 1 year before EDS diagnosis “You can’t dislocate without serious injury. Go out and ride a bike, that will sort you out”.
Rachel M Clark
57. A former head teacher in mainstream laughed when telling me my daughter was just naughty & wouldn’t conform. She also said she’d never get a Statement of Needs. My daughter was diagnosed ASD & Hypermobile, got her Statement & has gone on to attend an ASD school. x
Debbie Summerskill
58.My 6 year old daughters Paediatrician didn’t know her Rheumatologist and physio diagnosed hypermobility EDS, when I asked why he hadn’t considered it he said she doesn’t look like she has it ( I counted to 10) then handed him the diagnosis in writing. 😬
Vanessa Gain
59. I saw a physio with my daughter and said I was concerned it was EDS rather than hypermobility she said “Well do you watch coronation street? Izzy off there has EDS that’s EDS and clearly ur daughter hasn’t got that”.
Jane Pilley
60. When asking my child’s locum physiotherapist for advice managing chronic fatigue in my EDS, ME/CFS teen last Christmas. “Just be positive, Merry Christmas”.
Sarah Wells
61. “There is nothing wrong with you, you are a normal, healthy girl” ….”Then why do my knees dislocate so often?”……”It’s very common in young people”…. “Nobody else in my school has this happen!” 😂
Anonymous
62. I went to the doctor on the advise of my physio who was concerned about my hip thinking I may have a tear inside so I explained to the doc the pain locking hip etc and his response was “I don’t no anything about your condition so I’ll have a read up about it and give u a ring”. Never heard from him again. Oh and he printed me off a leaflet on hypermobility in children. I’m 37. lol
Jane Pilley
63.Today GP stated she doesn’t know why my daughter would possibly need a wheelchair, despite being the person to refer my daughter to wheelchair services in the first place.
Kat Murray
64. “Sure EDS doesn’t cause tummy pain!”…psychiatrist.
Erin Devane
65. GP to my 14 year old daughter after 4 years of disabling joint pain when we requested to see a different rheumatologist as we suspected hEDS (her big sister already diagnosed). “You’re a fit and healthy young lady, I don’t understand why you would want this label” this is the same GP who googled POTS in front of us and was appalled at my suggestion of adding extra salt to her diet…
Sue Martin
66. The Senco in our first meeting said “There is nothing to worry about, my daughter was hypermobile and she stiffened up as she got older and is fine now”.
Naomi Bannaghan
67. My twin daughters teacher who is also the school SENCO told me my girls should take risks, they both have complex needs, including physical disabilities but apparently I’m an overprotective parent when I guide them while they climb slides etc.
Nula Jackson
68. Told my daughter had growing pains and when I mentioned the falls was told, “It’s just uneven ground!!”
Wendy Graham
69. To my son by a physio: “Hypermobility does not hurt and EDS is not genetic stop listening to your Mum as you’re worrying so much it’s giving you tummy problems.”
Elaine Wyatt
70.The reason I had my daughter ‘officially’ diagnosed was because I tried to ask a locum GP a question and got told I was an over protective mother who had too much time on her hands to Google things….
Belinda Isted
71.“She can’t have EDS, she would have had it since birth”.
Tania Bray
72. Deputy Head in team meeting where we were trying to reduce number of GCSEs as she had missed most of year 10 and was on 8 hours a week schooling: “She’s a bright girl, she can mug up on Maths in the Easter holidays”.
Chris Watson
73.When I see a new doctor, I tell them I have EDS and they reach out and pinch your cheek with a befuddled look on their face. You know that they have only read about it and the skin effects are the only part they remember! (I have only met one Dr. in my lifetime that had actually seen EDS before so I’ve had my cheek pinched an awful lot!)
Onale Thomas
74.“Oh, what party tricks do you have?”
Kaytee Marie
75. School Vice Principal questioning why a consultant and a physiotherapist had insisted on laptop use for what they said were the most flexible fingers they’d ever seen: “But we’ve even had children in wheelchairs who can write”.
Michele Morgan
76. That you can’t diagnose hypermobility in children as all children are hypermobile. :/
Kim Neige Guillot
77. A teacher commented when we brought his buggy to collect him in year 1 as we had a mile walk and the last bit uphill was always a struggle on his knees, commented “I know you’re think you’re trying to help him but keeping him in a pushchair is just stopping him from using his legs and building up strength”.
Naomi Bannaghan
78.“Just wait until you get old.” That ticks me off the most. Your old and obviously functioning. I have had days in the bed incapacitated since I was 23. (now 47)
Tracey Scott
79.My sons first teacher accused me of having Munchhausen’s by proxi. As he looks normal. Yeah I answered till he dislocates!
Anonymous
80.An orthopaedic surgeon telling me he could take a 100 people in off the streets and 5 or 6 could have the same neck issues show up on a scan but have no pain. Charged me over 200 euro and told me to get acupuncture. Left me nearly paralysed. Five years on and two surgeries later. Also same doctor told me I had Bursitis when I need a hip replacement.
Sylvia Kennedy
81. I had a doctor tell her “She can’t be that ill” as he’s never had anyone in so much pain they can’t be touched – turns out her list of ailments and complications were taller than his height lol….
Wendy Marsh
82. This was said to me not my daughter, when an orthopaedic consultant was examining my joints. He got to looking at my hips, put my legs together with knees bent then proceeded to pull them both outwards till they were flat down on the examination bed on each side, he chuckled to himself, looked at me and then said, “gosh yes you are very flexible aren’t you – your husband’s very lucky isn’t he!” In a really pervy way, totally inappropriate and insulting and I couldn’t get out of there fast enough. 😡
Anonymous
83. My GP best suggestion for muscle cramps and joint pain was to rub coconut oil on myself….
Peter Powell
84. One of our previous GPs refused to refer for connective tissue disorders and was harping on about getting a formal diagnoses for autism, which we didn’t want at that time.
Old GP: if we can diagnose him with autism he will get lots of support from the LA for home education.
Me: I am a trustee of the largest home education charity in the country, I know what I am saying when I say there is no support for home education from the LA. I want Marfans eliminated as it is a life limiting condition.
Old GP: Oh yeah…he does show signs of that… I will refer you then.
He initially referred us to haematology!
Abbie Green
85. A physio said “I refused treatment” and refused to treat me again as I said I’m allergic to chlorine (badly) and I couldn’t use the hydro pool. It’s all over my medical notes I’m allergic and set of asthma and burns skin.
Elaine Wyatt
86. “The pain you are experiencing is like when a soldier looses his leg but can still feel pain in it” from paediatric consultant.
Jane Pickin
87. From pain management clinic: “We don’t up doses in EDS patients”. Because apparently WE don’t get acclimated like EVERYONE else who has ever taken pain meds consistently. OR because my pain can’t possibly be getting WORSE as I age and EVERY joint in my body is becoming riddled with osteoarthritis.
Jennifer Young
88. Rheumatologist “You don’t have full blown EDS as you don’t have the vascular type!”
Anonymous
89. Seeing a GP about ongoing pain and falls for my daughter and the first thing doc says is “What exactly r u expecting from this appointment u must want something cause u keep coming back”. Umm let me think.
Paula Hampton
90. Doctor: “You don’t have to worry unless it’s Marfans…”
Libby Listens Bassnett
91. GP: “I think that the BP monitor may be faulty – no one has results like that”.
Sarah Wells
92. At 14 I was diagnosed with Narcolepsy and very depressed. Doc – “What do you like doing”? Me – “horse riding”, Doc- “excellent,”. Looks at my mum, “she needs a horse” Mum ” yes of course, and I’m guessing the NHS will supply one”???? 😂
Tanya Newing
93.My daughter has hearing loss from EDS and in 5th grade a substitute told her to take the chewing gum out of her ears… they were the pink molds for her hearing aids. Lol
The kids actually laughed at the teacher…
Amy DeWitt Marek
94.My dd pead keeps telling me to buy a trampoline for her constipation. I am sure it would help but I am not buying one!
Tania Bray
95.“Vascular EDS isn’t that serious”! ….pain specialist
Erin Devane
(First published on My Stripy Life December 2017.)
Writing can help you to manage stress by understanding what’s going on in your mind + can be a healthy + intimate way to deal with your emotions about your health condition and what that means. I have always found the process extremely cathartic : here is a letter I wrote to my Charcot Marie Tooth disease.
Narrowing this list down to just three things that help me manage my chronic illness has been tough. I've tired not to choose the top three things that help me manage EDS or CMT or even look at it through the eyes of the main symptoms but more through the lens of my...
What if the thing you really want is hiding right where you are afraid to look? This week my daughter turns 12. I am not quite ready to accept that she is ALMOST a teenager - my sweet little girl is turning into a bright and sassy young lady. For a birthday...
It happens to everyone no matter how many hours we have in a week, how supportive our families are or how great we are at delegating. Everyone. No one has there shit together all the time no matter how much they pretend that they do. But when you are living with a...
I’m fine. I used to use this reply all the time when people would casually ask me how I was. Short, sweet and to the point, but what does 'I'm fine' even mean? The dictionary would have you believe that I was feeling 'in a satisfactory or pleasing manner or very...
Does it make me special? One in 12 Million... the odds of having both hypermobile Ehlers-Danlos syndrome (EDS) and Charcot Marie Tooth Disease (CMT), based on current prevalence! Some days it feels pretty special, let me tell you why. I’m not going to dwell on the...
The A-Z of Ehlers-Danlos syndrome (EDS). Simple, jargon free and real. From adrenaline highs, mast cells and slipping rib syndrome to the zebra mascot. If you have EDS or know someone that does these thing will sound familiar. But, do you know everything there is to...
The great British cup of tea… I have to admit as I sit here cup in hand, I am slightly addicted. Meeting up with my with my girl friends at the local coffee shop on a Friday morning wouldn’t be right for me without my nice cup of tea. In recent years coffee has made...
Acceptance in human psychology is a person's agreement to the reality of a situation, to be able to recognise a process or condition (in this case a chronic illness or health condition) without attempting to change it or protest it. In simple terms getting your head...
7 golden steps to manage your chronic pain I have lived with pain for as long as I can remember, it’s now chronic, it’s never going away. I have Charcot Marie Tooth disease, a neuromuscular disease that affects the motor and sensory nerves to my arms and legs, you can...
Chronically Empowered Women is FREE private Facebook community of women who have chronic illness… and there are loads of us with EDS!
You may feel like no-one understands what it’s like living with your chronic illness or worrying everyday about your kids. That you are hanging on by a thread or the future may just feel a little uncertain. In The Tribe we get that.
You value life and want to be the best version of you. To manage your symptoms effectively so that you can live your best life.
In the community we will be having real, open conversations about how you can do this. With my experience of living with multiple chronic illness’ and raising kids with CMT, EDS, PoTS and ME. I know that the struggle is real. I will be sharing guidance, challenges, my personal tips and real life stories to remind you of how this can become a reality now!
When I put pen to paper (or fingers to keys) I did not know what I was going to write, I had no plan or agenda. I just wanted to tell you what it has been like living with my conditions. It was 20 years ago when I was diagnosed with my first rare disease. 300 million people are living with a rare disease worldwide. There are over 6000 different rare diseases with 72% of them being genetic, and 70% of those genetic rare diseases start in childhood.
I have Ehlers Danlos Syndrome and Charcot Marie Tooth Disease which are both genetic and both started in childhood – although were not diagnosed until my 20’s and 30’s. But that is not the point of this story. Looking back on my life over the last 20 years since my first diagnosis I don’t recognise the woman I was before, or who I became in the beginning.
I have evolved. This is my evolution.
Evolution
I never understood why people wrote in diary’s and documented their life when I was younger, I saw it as a complete waste of my time. Plus, I would NEVER want anyone to find them and read my inner most thoughts and secrets, they were safer in my head for sure. The parties, the people, the outfits, the hairstyles, the things that I thought were a great idea at the time… things that I’m glad were a phase.
Those times were fun but I am happy with the blurry half memories of the good bits and the laughter.
Then in my 20’s after I had not long given birth to my first child, in the midst of the hormones, the tiredness and a carrying around a body that decided not to work I was diagnosed with Charcot Marie Tooth disease.
My life as I knew it changed that day.
The outside world never saw it… I think that I hid it well? But right there in that moment I only really heard the words progressive, hereditary, incurable.
Who was I now? What did this mean? For me, my baby, my husband? Would he leave me? I wouldn’t blame him. Would I have more kids? Should I? When would I stop walking? How much pain would I have? Could anyone answer my questions? My inner voice was on a constant loop, noisy, frightened and ineffective.
I decided to pretend that I was OK, I hoped that by pretending it would become my truth. But the worry of the future and the grief for the life that I thought that I would live was like a vice around my chest every day. So much so that I couldn’t take a proper breath.
I felt its weight as a pressure that I had to fight against every single day.
I had surgeries, I got through them. I had more kids and with each one and with time it got a little lighter but it never really went away. I became a master at not letting it show and learnt how to share my space with it.
What all this did take was energy, and this really was a problem.
Fast forward another 10 years and I was a mum of three. A good mum, wife, we had a nice house, a good car, I really loved my husband and he really loved me. Phew!
But most of the time I was tired, like wading through mud and I hurt A LOT, an overwhelming pain where I wanted to cry most days. Which just made planning anything impossible and generally living quite tough, or it certainly felt that way.
We knew that our youngest has something going on, she was 18 months old and despite trying hard couldn’t walk. She was not lazy. She tried desperately hard to keep up with her brothers but when she stood sometimes her feet would actually face backwards. So we took her to a top Dr at a top children’s hospital… we paid.
In that appointment we were told that ‘she was within normal limits’. We knew better. But what really struck me, almost like lightening from the sky as I stepped out onto the pavement from that hospital was ‘Oh! this is not going to be easy’.
In that moment I woke up. In that moment a fire ignited in me that started like a flicker but in time would become a furnace inside me, a fire that would expand in me and allow me to breathe fully again. In that moment my little girl didn’t just have a mum I became her cheerleader, her advocate, her person.
Not long after that I began to write. Not a diary, but about things that happened to us; dance shows, hospital visits, holidays, tests and all the diagnoses that followed. My writing became a way for me to process my thoughts and as I did this I began to feel again. This had been the missing piece.
Over the last 10 years to be able to cope with my life I had shut down. Because I was living in my head, I was not able to feel in my body – because to feel in the beginning would have been overwhelming, unbearable. Shutting those emotions out was my way of keeping me safe, but when you shut out the sad, angry, messy emotions you also shut out joy, happiness… you stop feeling – anything.
Writing let me process my thoughts and know that they are just that… thoughts. They are not truth. I had a choice about how I viewed my world. I could view it through shit tinted spectacles or choose to see it another way. I chose to see things differently.
And this has been the magic.
This is where I took back control.
Slowly I went back to re-write the circumstances of my own diagnosis, story by story and looked at things through a new compassionate lens.
Mindset became my secret success hack.
As I dealt with the past my focus was only on the present and the future. We can get so caught up in what has happened or what might be and tell ourselves stories about what may or may not be true we stop seeing what is true. What is right in front of us. What we have.
The day I lit that fire was the start and writing added fuel to that fire, so did the love of my husband, my children’s laughter, my family, the broken health and education systems, a glass of wine on a Friday night with my best friend, my kids diagnoses’, injustice, the sunrise on a frosty morning, a cup of tea, great sex, my son getting sick with ME and all the goodness in the world.
This ignited my fire for life again… all the messy, f**ked up, emotional parts of life that are just that – real life.
I don’t know when it happened, I suppose it was gradual process, but the vice loosened its grip till one day it had completely gone and I hadn’t even noticed. It wasn’t like a switch that flipped or a conscious decision that I made just one day I thought ‘Oh that’s not a thing for me anymore’.
I’d found myself again and I was showing my kids how to love deeply, live freely and advocate like a MF tiger.
Looking back helps you to see how far you have come, living there is not healthy.
Celebrating that is empowering.
Life will never be perfect. That is life. In accepting that, there lies the freedom.
Our private Facebook group is a safe place for women with long term, chronic illness or disability (or those who are carers of kids with chronic illness).
It is a space to be you, to be honest that you want more than this, to be honest about not knowing how to start. A place where we can lift each other up and support each other. Where you can share your story and where we can inspire each other with our wins. It’s about understanding that life can be tough but also that we can do hard things. About recognising your own unique superpowers! Come and join us… we’d love to have you. 🙂
Writing can help you to manage stress by understanding what’s going on in your mind + can be a healthy + intimate way to deal with your emotions about your health condition and what that means. I have always found the process extremely cathartic : here is a letter I wrote to my Charcot Marie Tooth disease.
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