Rare Conditions – The Importance Of Supporting Mental Well-being

Rare Conditions – The Importance Of Supporting Mental Well-being

Now more than ever before it is important to support both mental and physical well-being in people with a rare disease diagnosis. Rare diseases affect approximately 3.5 million people in the UK (Rare disease UK), a condition is considered to be rare if less that 5 in 10.000 people are affected.

I have three conditions that fall into the ‘rare’ category, Ehlers-Danlos syndrome, Charcot-Marie Tooth Disease and Postural Orthostatic Tachycardia syndrome. I was at the front of the queue when they were handing them out, clearly! I now have my very own ‘rare’ children and work to support others with rare or chronic conditions as an NLP coach.  It is safe to say being a rare mum is just part of who I am.

One of the things I hear time and time again from other rare disease patients is how hard it is to secure their diagnosis in the first place, often taking years, sometimes decades to find out the name for their collective symptoms. Can you imagine that? Really. Think about how long it has been since the COVID pandemic started, feels like forever, right? Stuck in limbo, not having the answers, wondering what the outcome will be? Trying to stay positive but really a bit fed up. Imagine that is your health you are waiting for the answers to, in limbo, not knowing and probably feeling generally rubbish and scared.  Even the experts don’t have the answers. And it isn’t just months, but for years.

 

Picture of a zebra with the text 'Do you have a rare condition? The importance of supporting mental well-being'

 

There are many reasons why this is the case.

Have you heard the phrase ‘When you hear hoof beats, think horses not zebras?’ In medicine, the term zebra is used with reference to a rare disease or condition.  Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions but many medical professionals seem to forget that “zebras” DO exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions.

True in my case, it was 26 years after I was first hospitalised unable to walk before I got my first ‘rare’ diagnosis, and a further 10 before the pieces were put into place for the second and third.

Often conditions have similar general symptoms making it hard to pin them down, this coupled with the fact that doctors are trained NOT to look for the rare conditions in the first place makes diagnosis times even more lengthy.

Waiting times to get to get to specialist services is often long, between 3-6 months is not uncommon, often longer, and when you do get there you may then have to be referred on to someone else.

We are human, so sometimes the symptoms we present with may not be typical. As these conditions are rare and therefore not something that practitioners are seeing day in day out, not being the ‘text book’ definition just confuses and delays things further.

In my daughter’s case having two conditions caused a non-typical presentation, delaying her diagnosis. Even though she likely had the conditions that I had.

Most rare diseases are complex and chronic, potentially life-threatening and go hand in hand with reduced quality of life. There is no surprise that there is an increase of mental health problems reported in rare disease patients and their families.

There is often a small network of care available as the condition is so rare, where patients often rely of charities for support and information.  Many doctors that you see will never have heard of your condition, let alone treated someone with it, so you will have to become the expert in your own condition.

There is also the problems associated with the visibility (or invisibility) of many rare conditions which often leads to misunderstanding amongst medical professional, family and friends.

Many people have a real adjustment period after diagnosis where they will experience a range of emotions as they come to terms with what their condition means for them and their life.

In a recent report on the mental health effects of living with a rare condition, campaign group Rare Disease UK found health professionals’ attitudes played a major role. The findings showed that 88% of patients and carers saying poor awareness of their condition by health professionals had a negative impact on their mental health, while 80% were negatively affected by health professionals not believing them. Read more about how medical gaslighting can fuel this here.

With the physical and mental elements of rare conditions are so intertwined it is my opinion that care should focus on supporting people with their emotional well-being and their everyday lives, not just on the physical symptoms.

Due to the nature of rare diseases patients are burdened by persistent symptoms which impact their quality of life leaving them overwhelmed.  If people are not supported, then this can lead onto anxiety and depression.

I believe that early support is vital. Support to manage the emotions surrounding diagnosis and acceptance and help developing a toolkit to manage their symptoms and overall wellness.  With flexibility, strength and resilience you are able to cope with the curve balls that your health will inevitably throw at you.

To learn to work with your illness not against it.

quote 'you need to learn to work with your health not against it!'

This view is echoed by baroness Blackwood the minister responsible for rare diseases, she has been lobbying to raise awareness after her own experiences during a 30-year wait to be diagnosed with Ehlers-Danlos Syndrome (EDS).  “Early diagnosis of a rare condition is extremely important. Not only does it end the often very stressful and exhausting diagnostic odyssey for a patient, it also means they can get the support they need much earlier, including for their mental health. We want to see a more holistic approach where treatment for mental health conditions is more closely integrated with the rest of a patient’s care.”

Patients that have had to fight hard for a diagnosis have often had to fight for the justification from professionals that their symptoms are physical and real. They may be reluctant to accept any help for their mental wellbeing. Either they feel they have come this far on their own so they don’t need professional support or they are firm in their beliefs that no-one is going to tell them it’s all in their head. Either way people that would truly benefit from support to process their emotions and thoughts surrounding the impact that their health condition has on their life and move forward positively, will likely refuse it.

This year the NHS has been stretched, at points often beyond capacity so while we are making progress on this in the UK I anticipate that it will take time leaving rare disease patients in limbo.

Coaching can bridge the gap in this service.  For pro-active patients willing to take control of their wellbeing a good coach can provide a non-judgemental space to explore emotions and ways to deal with issues that are stressful, frustrating or overwhelming. To help you to focus on what you are still able to do, rather than what you’ve lost and work with you to with you to identify and pursue new interests which will give you a sense of purpose and meaning. Sometimes, what you need more than ever is someone to support you with your medical team, helping you to prepare for appointments, ask the right questions and to understand what they tell you.

A coach is all these things and more and often obtaining this kind of support at the right point in the journey can mean that accessing mental health services further down the line may never be needed.

I love to talk about coaching and I am super passionate about advocating for rare and chronic conditions. If you want to have a conversation about how this may help you please book a call.

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Join The Community

The Thrive Tribe is a community of women who have chronic illness or are a parent to a child who has an illness or disability.

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 Thrive 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. Or, to support your children to live theirs.

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 you join the Tribe you can find your ULTIMATE GUIDE TO SELF-CARE and HANDY SELF-CARE CHECKLIST available in the files to download.

The 10 minute guide to understanding that self care is far more than having a bubble bath and lighting a scented candle. Why it is important to plan for if you have a chronic illness or are caring for someone who does and, a handy checklist to get you started with great self-care practices to support yous physical and mental health and that fit who you are!

 

8 Ways That Imposter Syndrome Shows Up When Have A Chronic Illness Or Disability

8 Ways That Imposter Syndrome Shows Up When Have A Chronic Illness Or Disability

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 more balls juggling in the air; always trying to maintain impossibly high standards, and with each success you achieve the greater the feeling that you aren’t enough?

If so, you’ve probably experienced imposter syndrome, right along with an estimated 70% of the population.

Imposter syndrome was first described back in the late 70’s by psychologists Pauline Rose Clance and Suzanne Imes who recognised that this imposter phenomenon was particularly prevalent amongst a select group of high achieving women. But, it is known to affect all kinds of people from all walks of life, men, women, medical students and managers.

Even international superstars are not immune to its effects. Emma Watson, star of the Harry Potter movies told Rookie magazine, in an interview (2013), “It’s almost like the better I do, the more my feeling of inadequacy actually increases, because I’m just going, ‘Any moment, someone’s going to find out I’m a total fraud, and that I don’t deserve any of what I’ve achieved.”

More and more imposter syndrome is being seen in marginalised groups and shows up regularly in the disabled and chronic illness communities. It makes perfect sense that your feelings of self doubt and being a fraud are more likely to show up if you have grown up belonging to a group that was historically believed to be less capable.

According to the department of health, fifteen million people in England have one or more long-term health conditions, and the number of people with multiple chronic illness’ is rising. These are conditions which cannot be cured in most cases, but which can have a major impact on people’s everyday lives. Aside from the physical symptoms, people with long-term conditions are 2-3 times more likely to suffer mental health problems than the general population (King’s Fund) and with 15% of all long term conditions seen in young adults aged 11-15, this group is too important to ignore.

With the pressures in society increasing, imposter syndrome is likely to be seen more and more.

 

How does imposter syndrome show up when you have a chronic illness or disability?

The more I delve into this topic the more I can recognise my imposter showing up for me during the different stages of my chronic illness journey. As a young adult before my diagnosis, after diagnosis (while simultaneously trying to juggle work and hide from everyone the struggles with my health), when I was a new mum (and my health crashed to an all-time low), and even now, when I feel like I am not well enough to be ‘normal’ but don’t look disabled enough to fit into that space either.

Expert on the subject, Dr. Valerie Young, has categorised imposter syndrome into five subgroups in her book, ‘The Secret Thoughts of Successful Women: Why Capable People Suffer From The Imposter Syndrome and How to Thrive in Spite of It’: the Perfectionist, the Superhero, the Expert, the Soloist, and the Natural Genius. I can recognise elements of myself in most of these Imposter archetypes, particularly the perfectionist, the expert and the superhero. Read more here – What Is Imposter Syndrome and Do I have It?

 

image of a girl feeling like a fraud with a list outlining 8 ways that imposter syndrome shows up when you have a chronic illness or disability

 

Feeling like a fraud in your own body

I was diagnosed in my 20 with Charcot Marie Tooth disease (CMT) and in my 30’s with Ehlers-Danlos syndrome (hEDS), despite living with the symptoms since being a small child, at points hospitalised unable to walk. I encountered decades of normal blood test results and doctors telling me that there was nothing wrong, when in fact the doctors were never looking in the right place.

Now we know that imposter syndrome makes you feel like a phoney. Imagine being told all your life that your symptoms are in your head, that the pain that you are experiencing has no cause, so much so that you begin to doubt that it is real yourself. Then when, often as an adult, you finally get a diagnosis you still doubt yourself. The decades of feeling like a fraud in your own body are hard to shift. When you feel pain, even after the validation of a diagnosis, you question if it is as bad as you are imagining. This feeling of being an imposter can be as crippling as the pain itself.

 

Imposter syndrome and refusing your own success

These feelings spilled over into my studies at university. I came from a very working-class background and was the first person in my family to go to Uni. My symptoms continued throughout my teens and my time studying and I began to just push them aside more and more. If no one could find a reason then I must be imagining it, right? Dislocations would happen more often than brushing my teeth and I could relocate my patella as easily as zipping up my trousers. I worked hard and my grades steadily got better and better and I left university with a 1st degree. But, I didn’t believe that I deserved it, nor had I earned it and I put it all down to a fluke. Applying for jobs I would often downplay my expertise even though I was genuinely more skilled than the other candidates. Thankfully they saw me for who I was, sat in front of them with the skills I possessed and viewed my modesty as an admirable quality rather than the imposter around my neck holding me hostage.

 

Your imposter making you doubt your symptoms or disability

Occasionally I have to use a wheelchair to get about, when I can’t weight bear as my labral tear or hip impingement is flaring or if I have had a dislocation. There have been points over the last few years where our son would not have been able to leave the house without one. And, our daughter uses a wheelchair regularly when out and about to manage pain and fatigue. We can walk, mostly we look well (although that is not always the case with my son, but you generally won’t see him on those days), and we are happy. Which begs the question where do we fit? We certainly do not ‘fit’ into the disabled criteria, neither are we able bodied. Using a wheelchair part time can make you feel like a fraud and question your reasons for using it at all. Should I just manage without, even if it leaves me unable to walk for the next few days? That nagging doubt begins to creep back in.

Image of a lady with blue hair feeling self doubt with the text overlay '8 ways imposter syndrome shows up when you have a chronic illness or disability'

 

 

 

Imposter syndrome fuelled by medical gaslighting

With my diagnoses’ I entered two worlds; One where I had a genetic test to confirm it (CMT) and one where I didn’t (hEDS). And what I have noted time and time again is that the imposter phenomenon is far more present in the latter due to the continuing doubt form the medical community that hEDS exists at all. Similar practices are echoed in the M.E. (myalgic encephalomyelitis) community. Another condition is diagnosed clinically and at present has no conclusive test to diagnose. Medical practitioner’s gaslight patients by blaming their illness or symptoms on psychological factors, or by denying a patient’s illness entirely, for example by wrongly telling patients that they are not sick. After enduring decades of ‘normal’ test results I was adamant that I did not need nor want any support with my psychological wellbeing. I was not going to let anyone tell me that these conditions were in my head. This narrative caused by medical gaslighting is damaging, many people with long term conditions would benefit from support to process their emotions and thoughts surrounding the impact their health condition has on their life and move forward positively, but like me will refuse it.

 

Being a perfectionist and self sabotage

Being a perfectionist is the imposter avatar I relate to the most, this probably has something to do with my personality type but also relates to my experiences with disability and chronic illness. As a young teacher, quickly progressing through the ranks in school I placed impossibly high standards on myself to match up to my peers. I worked longer and longer hours, weekends, volunteered for things that I did not really want to do all in a bit to prove to others (and myself) that I matched up. That my disability did not need to get in the way and that I did not need special treatment. The truth was that my colleagues probably never thought about my health because I hid it so well and what I projected was so ‘normal’ and capable. What I did was place an impossibly high bar for myself to achieve and made myself more sick in the process. If I had been honest with myself then I may have stayed in the profession, either way I would have had a choice. My fear of failure and insecurities had a hand in sabotaging my own success.

 

Asking for help is sign of weakness

As a new mother my body actually started to fall apart. Surgery after surgery came and when I wasn’t recovering from a procedure, I just felt generally awful. On top of that I felt guilty that I wasn’t the mum to my young son I had visualised in my head. In a bid to prove to the world that I could cope I tried to do everything on my own, firmly believing that asking for help would be a sign of weakness. I felt ashamed that I couldn’t do everything (although people rarely saw because I didn’t let them). I was always striving to be better, not less than. Looking back with fresh eyes I can see that this time of my life was actually quite precious, I was present with all of my children every day. Had my body not been falling apart I would have undoubtedly been trying to conquer the world and having it all. The bond I now have with each of my three children is unbreakable and it is due to the fact that we have always spent so much time together.

 

Ableism fuelling imposter syndrome

Ableism, the discrimination towards able-bodied people is strong throughout them educational system in the UK, particularly when you have a disability or medical need but are academically bright. You are entitled to educational accommodations to help with your studies or tests, to level the playing field so to speak, maybe because you get brain fog and need regular rest breaks, or get hand pain when writing and need to use technology or a scribe. Many people with a disability or illness are made to fight for any real support leaving them with feelings of doubt questioning if they really deserve the accommodations in the first place. To get the right support in place for my teen, who was too sick to attend school at all took twenty months rather than the twenty weeks suggested by the UK government and we ended up in court. Twenty months and a court case to secure at home online education, that is now so commonplace. Seems ridiculous. Many give up as the system is stacked against them. I see the feelings of uncertainty in this population time and time again.  It stems from this deep rooted ableism, a lack of money and a system that is stacked against them.

 

Comparison feeding the feeling of not matching up

As someone with a (mostly invisible) disability, I am guilty of comparing myself to others. From my best friend would literally looked a stone lighter on a night out when she popped on her 6″ stilettos, while I donned sensible flats. To the mums in the playground with their perfect car and child and hair, that seemed to have it all. Fuelling the feelings of not being good enough that stemmed from my body letting me down. What I have come to realise is that no one actually has it all, least of all the mum who hid behind her perfect life to hide her own crippling insecurities and debt.

 

Facing my Imposter feelings

As I have aged and am now well into my 40’s I can look back on my life with reflective eyes, both on the progression of my chronic illness’, my work, my growing family and my feelings of being an imposter.

My feelings of being a fraud have pushed me out of my comfort zone at many times during my life, like when my tutor said I wasn’t bright enough to be in his A level biology class (note the first degree), or when I spoke to a room full of paediatric consultants about my children’s conditions and each year when I guest lecture at Brunel University. Credit where it is due, at points in my life my imposter has truly been the driving force behind my successes.

I am still a perfectionist, but I can recognise when that is not serving me and know that done is better than perfect. I know that I can play to my strengths, because I have many of them and am happy to ditch or delegate the other things to other people. I know that asking for help is a sign of strength not of weakness and by working together with others I can achieve so much more.

Will we still have to face gaslighting from the medical profession? probably. It saddens me to think that this still goes on. I stand strong in appointments with professionals and where our opinion differs, for example where a consultant told us he didn’t actually believe our son’s condition existed at all, (clinically diagnosed by an esteemed colleague). I thank them for their comments and move on… quickly.

Do I care that my daughter uses her wheelchair to ride to the park so that she has enough energy to play while she is there and still be awake at teatime? Of course not! Do we get funny looks when she gets out of her wheelchair and her older brother shouts ‘IT’S A MIRACLE’ for all to hear? Most definitely, but we laugh and carry on with our day.

What I am noticing is that I am raising children with their own health issues who are confident and proud, of who they are and of all their abilities and achievements. Disabilities or not they have a strong and positive self-concept and I am proud of each of them as they grow.

What has changed over the years is not my disability or illness or the world in which I live but my own thought processes surrounding everything to do with my life and my health. My mindset, my own attitude towards myself and my illness has grown, and what has followed is a freedom I could have only dreamed of in my early 30’s.

Do I wish I could wear high heels? Sometimes. But if that meant giving up who I have become I will keep this version thanks.

 

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Join The Community

The Thrive Tribe is a community of women who have chronic illness.

Right now you may feel like no-one understands what it’s like living with your chronic illness. That you are hanging on by a thread or the future may feel a little uncertain. Here in the Tribe we get that.

You value life and want to be the best version of you. To get your head around your diagnosis, manage your symptoms effectively and have open and honest relationships – so that you can live your best life and feel in control of your health condition.

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 for YOU now! 

I am passionate about this because I know the positive impact that my mindset has on managing my chronic illness and helping my children to live their best lives.

It has changed my life.

 

 

How I Fake My Chronic Illness Symptoms

How I Fake My Chronic Illness Symptoms

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 ever present in my life.  Quite the opposite in fact, because of the invisibility of EDS I have become a master at faking being ‘normal’.

Here are the top twenty ways  that I have learnt conceal my illness on daily basis and to blend with the masses – to appear to be normal. How do you fake your chronic illness symptoms?

One. Smiling… I make a huge effort to have a happy life and try not to let things get me down.  Just because I am happy whilst being ill doesn’t mean that my conditions have disappeared, it simply means I have chosen to be happy in spite of my illness’, which is no mean feat.   I have mastered the ‘fine thanks’ response when someone asks me how I am, no one honestly wants to hear the truth!  It’s important to be happy, it’s good for your health.

 

Two. Make up…. I put my face on every single day, it is my mask for the real world and I like wearing it.  Only those people that know me very well can tell how I am feeling behind the smile and the make up.  By looking into my eyes.  Even if it’s just a bit of mascara and a sweep of blusher it makes me feel better about the day ahead, more human.
 

Three.  Ditching the kettle… I have boiling water plumbed in because I can’t lift a kettle without a dislocation.

Four.  A pushchair… When my children were young my mobility was at its worst.  I would get out the buggy to hold on to when I walked along even if the children didn’t need to sit in it particularly.  I would let them hold on and walk slowly with me while it held me up.  I miss the fact that they are all too big for a pushchair.

Five. Leaning… Standing is hard work 1) because of pain and 2) because standing still makes me dizzy and when things are bad I can be clammy, shivery, breathless and can even faint when upright.  You will notice me just propping myself up on a table or a doorway.

Six. Fidgeting… Sitting and standing for any length of time is uncomfortable and moving just helps.  Fidgeting when I’m standing, calf pumps, fist pumps or squeezing a stress ball hidden deep in my coat pocket can also get the blood pumping to avoid me passing out.

Seven.  Standing up slowly… Always, to minimise the head rush and dizziness.

Eight.  Pacing… I am driven, I like getting loads done but I would find that I would push and push only to crash later.  Pacing used to be my enemy but I have had to work hard to make it my friend.  All of my daily activities are paced and no one would ever know! It increases the amount that I can achieve over a given period instead of feeding into the boom bust cycle.

Nine.  Hiding fatigue… You can’t see fatigue, unless you know me well and on the days when my fatigue is at it’s worst you won’t see me at all because I physically can not get out of bed or leave the house.  My life is planned 24/7 to manage this element but sometimes it creeps up on me and catches me out.  I have collapsed before unable to put one foot in front of the other and been rushed to hospital.  People won’t know or understand how bad this can get because they just wont see it.

eds pain scale graphic

Ten.  Managing pain… I have become an expert at hiding my pain (and I have a pretty high pain threshold), you won’t see the amount of medication that I take, the ice, wheat cushions, massage, hot baths, propping my joints with anything just to get comfy.   I am a master of disguise too, I can be standing, smiling and chatting with someone with a rib subluxated, unable to relocate it and unless I knew you well I wouldn’t even tell you!

Eleven.  Planning… If I do have something particular on a certain day then an immense amount of planning goes into it.  I’m still paying for a Spooky Walk for Halloween a week later in terms of pain and autonomic dysfunction because I had a meal out two days before and didn’t plan enough time for my body to recover in between.

Twelve.  Avoiding obstacles… This has become like second nature.  This time of year just walking to the car there are obstacles, the blanket of Autumn leaves may look pretty but in the dry they mask the unevenness of the pavement beneath and in the wet they are slippery.  I always walk around things where I can, or take another route.

graphis saying 'how do you fake normal when you are chronically ill?'

Thirteen.  Wearing a vest… I have the ability to stand in 30 degree heat in the summer and still have goosebumps, I wear vest all year round.  I’m also fond of a scarf  gloves and a hat.

Fourteen.  Orthotics / braces… These are hidden in my shoes, under my jeans.  Unless something visible like my wrist or thumb was braced you would never know.  There was one time this year my ankle was in fact braced as it was subluxated and wouldn’t relocate.  A mum at school spotted it and questioned if I was wearing a tag!  What she didn’t notice was the excruciating pain on my face as I had to bare weight, I have learnt to hide it so well.

Fifteen.  Tight clothes… Skinny jeans aren’t a fashion statement for me they are a necessity to hold my hips and pelvis in place and increase proprioception to my joints.

Sixteen. Eating well… Eating small regular meals helps me to manage a whole host of gastro and autonomic symptoms as does eating gluten free.  If you went out for dinner with me would you know by my choices?

Seventeen.  Being vague with arrangements… This is another one of my coping methods, I can never tell how I will be feeling from one day to the next let alone a week or two in advance so I tend not to make definite plans unless I have to.

Eighteen.  Linking arms with a friend… To steady myself perhaps because I’m hurting or if I’m walking somewhere tricky; slippy leaves, a wet floor or if its icy.

Nineteen.  Friends… Making time for a regular cuppa with friends to chat about anything else but Ehlers Danlos, health and hospitals.

Twenty.  A sense of humour… This is so important when faking being normal.  Being able to laugh at yourself and having the ability to look back on situations that have happened with a smile (because there are many) is a must.

 

So when someone calls me a faker in a way the are right, I have become a master at concealing my EDS symptoms in order to just live.  I choose when to talk about what is going on for me and when not to and who needs to know that information about me.

What I’ve learned is that my conditions are a part of me, they are not who I am.

They deserve their space in my life in order that I can manage them effectively but they are not all that I am. I put many things in my life over and above chronic illness symptoms and disability and that ensures that it is kept in perspective.  I’m a mum, wife, coach, educator and advocate – I love to draw, to write, to read, to eat in fancy restaurants and enjoy time at the local pub in front of a roaring fire.  I love the sky and all its colours and to watch the sunrise with a nice cup of tea.  Absolutely all of these things consume my thoughts before chronic illness gets a look in and that is key to living your best life even with an illness or disability.

 

The original version of this post was published on My Stripy Life and was picked up and published on The mighty Site you can check it out here and my other published posts.

Here are some of the comments on the post…

Oh, the pushchair….how I empathize with that. I just sank an eye watering amount of money into what will be our last stroller…my daughter is almost 5, and she rarely rides in it, but when she runs out of energy, she is DONE and at 40lbs, is too much for me to carry for very long/far. I get the odd funny look at her in the stroller, but frankly I don’t care. If it helps us get out when my joints are angry at me, and when she is having a rough day, people can just mind their own business.

I do so many of these! Thank you so much for sharing, now I don’t feel like I’m the only one. I sometimes wonder whether I should actually be honest about how I’m feeling with people, but from experience, unless they’re already close to me, they don’t usually pay any attention even if I do tell them the truth. I sometimes we could do with a hug, so I’m sending one to you to say well done, not in a patronising way, but in a wow you’re amazing way. To have gone through that much and still function each day, even if deep down you don’t feel like you are, you’re truly amazing.
Hi you are a very courageous woman my lovely and as the comment made by Linda my partner has this nasty condition, she also has O, I, brittle bones she never complains and yet like yourself is in constant pain . The drs told us it is very rare disease but im not so sure its that rare as we have read and heard about so many more people who have this disease .thanks for sharing your story with everyone my partner felt quite alone before but is now seeing she isnt on her own I love her so much and it tares me apart not being able to take her pain away.xxxx
Sounds exactly like our daughter who is 16 years old. I sent it to my husband and if he would have not known it was written by someone else, he would have thought our daughter wrote it. Thank you for sharing. Having a child who as EDS has not been an easy feat lately, especially, when she is also a teenager. It is nice to know there are others who have experienced the same exact symptoms as she is currently.

The first week it went up it was the most read post on The Mighty Site.

Please share your thoughts below – others would love to hear. Be Mighty!

 

graphic with the words 'How i fake my chronic illness symptoms @sarahwellscoach

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Join The Community

The Thrive Tribe is a community of women who have chronic illness or are a parent to a child who has an illness or disability.

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 Thrive 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. Or, to support your children to live theirs.

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 you join the Tribe you can find your ULTIMATE GUIDE TO SELF-CARE and HANDY SELF-CARE CHECKLIST available in the files to download.

The 10 minute guide to understanding that self care is far more than having a bubble bath and lighting a scented candle. Why it is important to plan for if you have a chronic illness or are caring for someone who does and, a handy checklist to get you started with great self-care practices to support yous physical and mental health and that fit who you are!

 

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