EDS And CMT One In Twelve Million

EDS And CMT One In Twelve Million

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 detailed science involved with hypermobile Ehlers-Danlos syndrome (EDS) and Charcot Marie Tooth Disease (CMT), the genetics behind the conditions so to speak.  I may get into that all in a bit more detail at a later date.  I will try to explain what it means to live with them each day, why I might look fine one day and not the next.

 

CMT

 

Lets start here, CMT is genetic, it has been passed to me from my mum. We were unaware it was in our family until I was diagnosed after complications having my first baby. It is thought that around 23,000 people in the UK are affected.  I have a 50% chance of passing it on to my children. I have three children now, our youngest had a positive diagnosis just before her second birthday, one of the boys has a negative result and one hasn’t been tested as he has no symptoms… but it may still be there.

CMT affects the nerves in your peripheries, your arms and legs.  Our body’s system of nerves is similar to a network of electrical wires. Some of them, called sensory nerves, are designed to pass information back to the brain about what you can feel with your fingers, toes, legs and arms, etc. The others are command pathways, telling your muscles to do something, like lift your left foot – and are called motor nerves. CMT affects both these types of nerves so you can experience weakness and wasting in your muscles, numbness and sensory problems. In the type that we have in our family the myelin sheath of the nerve, the insulation, isn’t working properly affecting the speed of the signals getting through. This deterioration causes atrophy of the muscles in the foot, lower leg, hand and forearm.

The muscles in my feet have wasted significantly and I now have foot bone abnormalities including pes cavus feet (high arches) and hammer toes and I walk with supination (roll onto the outsides of me feet). My leg muscles are doing the job that the foot and ankle muscles aren’t – thankfully – and I am fortunate enough to be able to still lift my feet. It does mean I over work my hip flexors, iliotibial band and hamstrings to walk and cramp and pain wakes me often at night.

The muscles are wasting in my hands and my wrists are weak giving me problems with hand function and dexterity, they are often painful as they don’t have the muscle bulk to do the work that I ask them to do each day.  I also dislocate and subluxate my thumbs and wrists in a couple of places but EDS has a part to play in this.

CMT is progressive, it won’t get better or go away but it is not life limiting. When I was diagnosed I was a new mum and having a hard time getting my head round it all. My neurologist said to me at an appointment, “If I had to choose any of the hereditary neurological diseases I would choose CMT.” At the time, as I was grieving the loss of my future, I thought he was nuts! But he was right. There are much worse neurological conditions to have, he didn’t know at that time however I had EDS as well.

 

 

 

EDS

 

My EDS diagnosis came later, 10 years later.  At first we thought that CMT explained everything in our families weird and vast medical history but as time went on gaps showed. Rubie blessed our lives but as she grew developed the skills of a contortionist and we started to want answers to all of the unanswered questions circling in our mind.  It was recommended that I see the amazing professor Rodney Grahame before my foot surgeon would consider surgery, at this point I had been reading his books to gain answers to Rubie’s hypermobility, so I had half an idea what was coming 😉 After an hour and a half’s consultation I now had a shiny new EDS badge to wear. The missing pieces of our puzzle now slotted into place.

EDS is the term given to a whole collection of inherited conditions that fit into a larger group known as hereditary disorders of connective tissue. Connective tissues provide support in skin, tendons, ligaments and bones, it is the glue that holds the body together. There are several different, distinct types of EDS, but they have some features in common, loose joints, stretchy skin and tissue fragility. I have hypermobile Ehlers-Danlos Syndrome. The exact cause of hEDS is unknown. The features suggest that there is a problem with connective tissues and possibly collagen. The condition appears to be inherited which suggests that there is a genetic cause. It is likely that there is an alteration in a gene, or several genes, containing the instructions for making connective tissue. This results in the connective tissue being less effective.

It leaves me with joint hypermobility, my joints having a wider range of movement than usual, they are loose and unstable, can dislocate and subluxate. This happens daily, this week cutting a slice of cheese I popped out my wrist and dislocated my ankle trying to pull off my jeans. It not uncommon for a sneeze to dislodge a floating rib. In my 20’s I would dislocate my knees on a daily basis with minimal trauma, walking into Regal’s (the local night club) on a Saturday night or turning over in bed. I had major knee surgery to realign things and tighten ligaments so it happens less now than before but is gradually becoming more of an issue again.  As my joints are less stable they are prone to sprains and strains.

I’ve had to make friends with the pain, it’s part of my daily life now. This can be ‘acute’ when I overdo things or as the result of an injury like a dislocation or ligament injury. It can also be a sustained persistent pain, this is worse for me when I am tired and I can feel like my whole body has been beaten. I also get a lot of neuropathic pain. I have learnt a lot about managing the pain I have. I’m a classic boom buster and pushing through my pain every single day wasn’t doing me any favours at all. Now I accept it, deal with it with medication, pacing and distraction and move on. My mindset plays a major part in my pain management as well as the CBT technique of pacing.

My proprioception is poor, this is my body’s ability to sense stimuli arising within the body, with regard to position, motion and equilibrium. To sense where ones body is in space. It affects balance and co-ordination. It is further affected by the sensory and motor nerves in my hands and feet being significantly limited.  I rely on my eyes for a lot, and now I’m well into my 40’s my eyesight needs a little support too!

There is a plus to all of this though, soft velvety skin. Many EDSer’s look years younger than their age. The downside is that I have mysterious bruises appear everyday, my skin marks really easily and my scars are stretched and thin. When I was in the pain rehabilitation programme at Stanmore  a few years ago and first met the girls on the ward they were shocked to hear that I had three children. I was actually 28 when my first child was born and was 38 at the time. Up until I was 39 I was asked how old I was when buying a bottle of wine in the supermarket. In my teens this would frustrate me, at nearly 40 I was quite flattered. There has to be a plus to this right?

 

 

Autonomic Dysfunction

 

One of the worst symptoms for me is the autonomic dysfunction that can go hand in hand with EDS. The functions that your body takes care of automatically, without you having to think about it. These manifest itself with feeling dizzy, faint, passing out, palpitations most often when you change position from sitting to standing. Other symptoms include difficulties in maintaining body temperature, shortness of breath and cheats pain, migraine, adrenaline surges, fatigue, hypoglycaemia, headache, blurred vision and brain fog and abdominal symptoms such as bloating.

These autonomic symptoms never go away they are always lurking in the background waiting to pounce. When they flare life is impossible, I have been in a position for weeks on end where I can’t lift my arm to brush my hair, talk without being completely breathless or stay awake for more than a couple of hours. I am very thankful that my autonomic symptoms flare up then settle down again. I have and a flare last for months in the past and it probably take a year to pass fully. Imagine living with it at that level daily, forever?  I manage my symptoms every day by drinking plenty of water and adding salt to everything, increasing my blood volume, keeping physically conditioned (which is easier said than done!) and some medication.  But key to living well with all of my conditions is to listen to the warning signs and stop before my body completely crashes.

The laxity of the connective tissue in the stomach and colon as well as the problems with the body’s autonomic responses can be responsible for many abdominal complaints, such as bloating, constipation and gastroparesis.  So to combat that I eat a wheat and gluten free diet and it helps relieve some of my gastro symptoms such as bloating and nausea. Small regular meals and medication help with the rest.

 

 

Fatigue

 

 

The fatigue can be relentless, I’m guessing that I am lucky enough to get a triple whammy of this from the CMT, EDS and autonomic dysfunction. Fatigue is a severe form of tiredness that exists despite a proper nights rest – or even a whole week in bed. Many people with EDS are diagnosed with ME or CFS long before their EDS diagnosis. This is exactly what happened to me, when no one could explain why 3 months had passed and I still couldn’t function I had am ME label put on me without being properly diagnosed or supported. Having a son now with true ME I can see the similarities but also the distinct differences between us. He has been much more sick for a much longer period with ME, with post exertional malaise (PEM) and cognitive symptoms, like memory loss, recall problems and concentration being the hardest symptom to manage long term (not ideal when you are studying for your A levels).

 

What Helps

 

Having a good attitude to having chronic illness helps. I’m not saying it’s always easy; when something pops and won’t relocate for days and days it’s hard, managing a family, school and hospital appointments on bad days is tough, being taken to court by the local authority because you are trying to secure an education for your teen that is too ill to get out of bed – you get the picture, it’s not all rosy.

The key to success? It begins with acceptance. You don’t have to be jumping up and down with joy that this is the situation for you but to accept that for today this is how it is – and not fight it.  You need your energy and it’s not to battle your situation 24 hours a day 7 days a week.

When you are in the depths of a new diagnosis and processing what that means for you and your future your mind is consumed with thoughts of illness and loss. It’s natural I get it. I’ve been there.  But your world can shrink in a heartbeat… suddenly all you are talking about and reading about is your illness and condition; the worst case scenarios, the Facebook groups full of people competing to feel the worst.

It time to get real, how will this make you feel? About your life? About your future?

Arming yourself with the right information, getting educated – that’s great – but getting lost in a black hole of sadness and self pity is not. There is a fine line. Be careful.

Live, re-connect to who you are and what you want. Has that changed? Great, in life the only thing that we know for certain is that things change. What do you want now?

Who are your people? Who lifts you up and brings you joy? Who drains you? Who believes you? Sometimes the people that are there for you 24/7 to give you all the love and support may be keeping you stuck – even if their help comes from a place of love. What and who do you need right now?

What can you do? A small step that can make you feel a little better? A little stronger? (no matter how small) Can you do it every day and keep the consistency going.

Can you answer some of these questions for yourself and think about how you could start to make steps today?

Mindset work and pacing has been key to me living well with EDS and CMT in my life, it’s why I am a huge advocate for it and why I help others in similar positions in my coaching practice. I know and see first hand the good it can do.

I combine a combination of wellness coaching, CBT, mindset and NLP techniques to get fantastic results form my clients. To help them to move from stressed, tired and overwhelmed to become strong and empowered, energised and confident – ultimately in control.

If you would like to talk about how working with a coach could help you book a call, it’s free.  It doesn’t matter if you qualify for the programme or not, during the call we can help you to get clear on what’s holding you back.

I’M IN – BOOK MY CALL

EDS And CMT One In Twelve Million

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Join The Community

The Thrive Tribe 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 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. 

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!

The A-Z of Ehlers Danlos Syndrome (EDS)

The A-Z of Ehlers Danlos Syndrome (EDS)

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 know about EDS?

When I was diagnosed I remember the Aha moments kept coming as more and more things from my past slotted into the definition of my shiny new diagnosis… like my narrow arched palate and local anaesthetic never working!

Please share far and wide!

Let’s make people aware that having EDS is far more than soft skin or loose hypermobile joints.

 
 
A is for adrenaline
 
B is for bowel and bladder
 
C is for connective tissue
 
D is for dislocation
 
E is for elastic, velvety skin
 
F is for fatigue
 
G is for genetics
 
H is for handle with care
 
I is for invisible illness
 
J is for joint hypermobility
 
K is for kyphoscoliosis
 
L is for local anaesthetic
 
M is for mast cells
 
N is for narrow palate
 
O is for orthostatic intolerance (POTS)
 
P is for pain
Q is for questions
 
R is for relaxin
 
S is for slipping rib syndrome
 
T is for TMJ
 
U is for unexplained stretch marks
 
V is for vascular EDS
 
W is for widespread symptoms
 
X is for x-rays
 
Y is for years to diagnosis
 
Z is for zebra
 
 
Do you have a loved one with EDS?
 
Share this post and get their opinion…

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Join The Community

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

You may feel like no-one understands what its like living with your chronic illness, 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.

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!

 

Acceptance – Why it is so important when you have a chronic illness?

Acceptance – Why it is so important when you have a chronic illness?

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 around the cards that you have been dealt.

For many people who are dealing with a chronic illness the term acceptance can be tricky. If people are told by others to just accept their condition they can feel like they are being told to suck it up or to stop complaining. Which in fact if you think about it is the opposite of acceptance. These well wishers may be trying to help, but acceptance is a process that doesn’t just happen because someone suggests that it may be a good idea.

True acceptance involves, recognising your experience, accepting your reactions to it and working through them until you reach a point that you no longer want to fight or change the situation.  It’s alright to be angry, sad, or hurt by that reality, but the goal is to acknowledge the fact that there are some parts of your situation that you cannot change.

 

image of lady with a tear running down her face as she is processing the emotions involved in her chronic illness diagnosis

 

Accepting your condition

For me acceptance has been a journey that I have walked for nearly 20 years. When I was first diagnosed with CMT my life was completely turned upside down. The young successful adult that I had fought to become was no more.  I had a new baby, who I loved with all my heart, but my career was stolen by my dwindling mobility, I was struggling more than I ever had in my life.

I had two surgeries in quick succession and more planned. I was coming to terms with the fact that I had an incurable neuromuscular disease that was progressive with a 50% chance of passing it on to my child; coupled with the fact that the things that I had worked so hard for and that I felt defined my identity were being taken away from me.

A year or so down the line I thought that I had accepted this condition. What I could actually do was talk about the science behind it all with ease but I had not dealt with the emotions of it all and was still fighting myself to be an able bodied young woman and beating myself up about the career I didn’t have anymore.

It took two years, that and the third surgery to be successful for me to finally begin to come to terms with the diagnosis and accept what it meant for me, for my future and my now growing family.

Throughout this time I learnt to deal with the emotions that I felt, be it sadness, anger or anxiety by meeting them head on. In doing this I became more resilient and emotionally tough by allowing myself to feel what I was feeling helped me to move through it, and allowed me to turn my attention towards more meaningful things.

 

Accepting the implications for your future

Accepting the implications that my condition would have on my future was tough. I had it all planned out in my head – I had a first degree, had recently married the love of my life and we had brought out first home together, I was working hard in a job I loved and had been promoted.  Along came our first child and I envisaged working hard and having long summers away as a family. 

My body didn’t get the memo.  As it slowly fell apart so did my hopes and dreams for the future. I was unable to work and I began to question everything – if I wasn’t a teacher? who was I? 

What this actually gave me was a chance to step back and reflect on who I was and what I really wanted from my life. The inner work that is so important and often overlooked while we are pounding the treadmill, trying to have it all.  

The nature of chronic illness is that it is ongoing, and in many cases degenerative or permanent. Which means that your health can change at any time. So the process of acceptance can change over time as new symptoms may present and conditions progress further. Being resilient helps you to cope with these unforeseen circumstances.

When I had further diagnoses’ of EDS and PoTS ten years after the first, it was evident at this point that I had done the work. The process of acceptance that I had gone through before was replaced this time by relief and self-compassion. I was able to bounce back from these circumstances but also had a positive outlook throughout. I had learnt not just to handle the situation but how to.

 

Accepting the limitations that are now placed on your life or relationship

One of the hardest things has been to accept that I can’t do everything, that I have to manage my chronic illness’ as if they were a full time job, in order to lead a more normal life. To know that this has to happen, to admit that some things are hard for me and to know that if I try to do everything I will become ill, have more pain or not function for days.

I am constantly walking tightrope, if I balance carefully I may reach the other side unharmed, rush, plan poorly and I will most likely topple and pay for it later.

So, I have learnt to balance my life, management is the only option there is no cure or magic pill for my conditions.  For most long term conditions, even with medical treatments management is key to living well long term.

This has become so much easier for me as I have truly accepted my conditions and the impact that they have and will always have on my life. I recognised that I had little to no control over certain elements of my health made the decision to stop struggling against those. Validating, rather than minimising or rejecting my experience. I now honestly assess my condition, my options and my choices and place my time and energy on the things that I can control rather than those that I can not. And, I enjoy the freedom that comes from being in that position.

I slowly learnt that there is a time and a place to fight my illness but it is not 24 hours a day 7 days a week. Dropping the moment to moment struggle has been surprisingly freeing. I no longer fight constantly for it to be different, which has given me so much more energy to do the things that I love to do like meet friends for coffee or spend quality time with the kids.

I now make choices about my life rather than feeling like all the choices have been made for me.

Acceptance has given me back that control.

 

happy family enjoying time together after a chronic illness diagnosis

 

 

 

 

12 things that you can do today to help you to accept your chronic illness?

  1. Start where you are at right now – this is your journey.
  2. Accept that this is a process and due to the nature of chronic illness, (eg:- new symptoms or progression), the process of acceptance may change over time.
  3. Acknowledging that even though it’s not fair that you are ill, that it has happened, and you need to work with where you are.  Deal with your emotions head on.
  4. Avoid focussing on the good old days all the time, past is past – stop obsessing over “what if’s” and accept that this is the reality and you need to move on from here.
  5. Accepting that some of your past goals or plans may no longer be realistic, and allowing yourself to mourn this loss.
  6. Stop searching for a cure if evidence suggests one does not exist, and focus on managing & controlling your symptoms.
  7. Denial will not make your illness go away – you can accept that you do need treatment if your disease calls for it.
  8. Accepting that no matter how well you stick to your treatment, you do not have full control over your condition.
  9. Learn to adapt to adapt to uncertainty – flexibility will be your friend – have a destination but know that there are many roads that may get you there.
  10. Know that you are more than your illness – make plans, have fun, don’t compare yourself to others or your past self, grow.
  11. Accept that you may never have a satisfying answer to why this happened.
  12. Live.

Eating an Apple Metaphor

Acceptance is like eating an apple. 

You could be trying to lose a little weight or eat a little healthier, so instead of snacking on your usual slice of cake, you have an apple. You may “choose” an apple, but what will it be like to eat that apple? As you eat it, you start comparing it to the cake. With each bite, you’re thinking about how the apple isn’t as sweet, fudgy, and good as the slice of cake. Then, when you’re done, you eat the cake anyway.

Another way to experience eating the apple is to just let the apple be an apple, rather than needing or wanting it to be something it is not. Just notice the crispness of each bite, the juiciness, and the sweetness for what it is and not for what it isn’t, a slice of cake!

I believe that acceptance is the foundation for living well with a chronic illness, health condition or disability. And, by learning to just let the apple be the apple you will reach the stage in your chronic illness journey where you no longer want to fight or change the situation. 

This gives you energy and choices to manage your symptoms more effectively, evaluate what you want in the world and learn how to communicate better with everyone around you. Acceptance is often the first step in this process, where you commit to yourself and truly acknowledge who you are.  

Want to know more about acceptance and how I can support your journey to live chronically well >> lets talk 

 

 

 

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How I Fake My Chronic Illness Symptoms

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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)

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...

EDS And CMT One In Twelve Million

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...

Join The Community

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

You may feel like no-one understands what its like living with your chronic illness, that pain and fatigue are getting you down. 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. 

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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Managing Chronic Pain Without Medication In 7 Golden Steps

Managing Chronic Pain Without Medication In 7 Golden Steps

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 think of it as having wonky wiring.  I also have Ehlers Danlos Syndrome, a connective tissue disorder meaning in simple terms that the glue that holds my body together is too stretchy, like chewing gum. One condition is progressive the other multi-systemic meaning chronic pain and fatigue are common features in both of these conditions.

For generations pain is something that I have tried not to think about, to put to the back of my mind, to push through.  I had always been a high achiever, setting myself goals and working hard through school, university then in the world of work, there wasn’t time to bother with the pain and the limitations it placed on me.

As the years rolled by my ability to keep up this fight began to slip away, I was having more periods of chronic fatigue wiping me out for months and pain that would consume me.  It has not been uncommon for me to collapse, physically unable to put one foot in front of the other.  My health had already robbed me of me career as a teacher. Then in a gradual process, that to the untrained eye may even remain unseen, my life became more and more difficult. I never made it out in the evening with friends and even taking the children to the park for half an hour was a huge effort, everything revolved around the pay off and the pain that the task would bring and life began to get smaller and smaller.

I decided to fight back but in a different way, this was an active choice for me. It was only at this point that things started to change. Over the last ten years, in a slow steady process I have made positive steps to cope and to live.

Looking back I can barely recognise the desperation that I felt at that point in my life and the overwhelm that consumed me. I now see what that it is a combination of lots of elements that have allowed me to change and maintain that change over time.

 

 

Managing chronic pain without medication in 7 golden steps

 

 

 

1. Acceptance Lady with her head in hands due to chronic pain

One of the hardest things for me has been acceptance, my chronic pain is something that I would like to get rid of but I can’t, at times it has angered me and made me sad, reflecting I think that’s helped me on this journey. It is part and parcel of EDS and CMT and may get worse over time, I now accept this fact and deal with it. I view pain relief now as a form of control rather than it being a weakness. It is proven that mood and stress all have an impact on pain. So the process of acceptance involved becoming a master of my emotions and my thought processes and letting go things that are not serving me. With this my chronic pain has become easier to manage.

 

2. Let go of all negativity

I have learnt to let go of negativity.  Some people won’t understand the pain that I live with or how it impacts everyday on my life. This used to bother me a lot, especially when a family member didn’t have a clue and did not want to take the time to learn but would be quick to judge, dis-believe or offer advice.  Or when someone would give me ‘poor you’ sympathy when I know full well they really didn’t care. I can’t say that I am totally immune to their comments, I’m human after all but I am learning to let go and to focus on what is important, life is too short. You do not have a control over other people but you absolutely have a choice over how you respond to them. It strengthened my relationships with people around me that are important and allowed me to see which relationships were not serving me and let go.

 

3. Empowerment through learning

Empowerment came when I made friends with my illness. When I was first diagnosed I didn’t want anyone to know about it, I wanted to be normal, the same as everyone else. I went through a long grieving process. I grieved for the things I knew I would loose and where my illnesses would impact. This took time. Now I can talk to anyone about these conditions and enjoy sharing my experiences with others, EDS and CMT are part of me and that’s fine.

I have learnt about my conditions in order to manage them, reading, networking and attending conferences have all enabled me to understand why I have my symptoms and the correct ways to manage them, it’s made a huge difference. Facebook has been an amazing source of information but I steer clear of the ‘poor me’ Facebook groups about my conditions where people seem hell bent on competing to have the worst symptoms, as I believe that is not a healthy narrative. Where there is support, great… learn, take what you need and move on. You are more that your illness and spending too much time online in un-supporting environments can be counter intuitive.

 

4. Strength through exercise

I’ve got moving, I regularly attend Pilates classes, I brought a dog so that I have to walk every day (although as he ages and my knee is failing, neither me nor the dog can manage to walk most days) and I do resistance training most days even if it’s just 5 minutes. In the past I have driven to a Pilates class (on more than one occasion I might add), parked up outside and sobbed.  Part of me knew that I must push myself to go in, to get stronger, to get better but I didn’t have the energy to get out of the car and walk through the door, I would drive home defeated.

There is a balance to be found between being doing too much and doing too little, both are counter productive, it is important to build strength at a steady pace so that you can maintain it.  Slowly, the stronger that I have become, the less falls I have and the more confidence I have gained and I don’t visit that rock bottom place so much now. I feel proud of what I have achieved. When a trusted consultant reviewed my history and surgeries they were genuinely surprised at how mobile I was, that I should be pleased I was not using a wheelchair.

When you exercise, your body releases chemicals called endorphins. These endorphins interact with the receptors in your brain that reduce your perception of pain. Endorphins also trigger a positive feeling in the body, similar to that of morphine… so a win, win for pain.

 

5. Coping strategies

One of my friends commented how vague I am when making arrangements. She was envious at my laid back nature as she always liked to be super organised.  Now she realises that I am deliberately vague as I can never predict how I can be feeling from one day to another and that way I don’t have to cancel plans if I can’t make it. I type instead of writing, we have installed a zip tap so I don’t need to lift a kettle, I have two handled pans in the kitchen and I have a cleaner. I have developed these coping strategies without even realising it over time.

I have learnt to set boundries in my life without feeling guilty about it and to focus on what I need and want leaves me more time and energy for the people that I love. This new way of looking at my life took work, but ultimately I am showing my children that they need to value themselves too.

Don’t underestimate the power of lots of small interventions, they can make big difference.

 

6. Pacing, pacing, pacing

lady tired due to pain and fatigueChanging my mindset did not happen overnight.  I rebelled.  With a busy family I thought that the only way to

function was to push, push, push but I realised that it made the crashes more severe.  Feeding into the boom and bust cycle only serves to increase pain over time, once I understood this and could see the benefits that change could offer and it became easier to implement. Pacing my day activities to stop feeding into the pain is my most effective way to manage long term.

 

7. Focus on the good

Have you ever been buying a new car? You see that car everywhere don’t you? The same happens with your illness. The more focus you give to the negative elements of your condition, the pain, fatigue, the loss, what is hard for you now, the more you will see evidence for those things. The subconscious mind likes to send you evidence for the things that you are thinking about.

I try to focus not on what pain takes from me but what it has given to me, the relationships that have been strengthened, confidence, positivity, empathy and  my ability to not sweat the small stuff.

 

 To Sum Up

I love to give back, at first this involved writing and sharing our families story with the world @Mystripylife about living with these often mis-understood and under diagnosed conditions. I love to speak at events to raise awareness. The catalyst was always to raise awareness and make things a little different for my children as they grow and embark on their own journeys with varying degrees of symptoms from CMT, EDS, PoTS and ME.

This has grown into undertaking training as an NLP coach to support others on their journey and empower them to live chronically well. I give them the ability to laugh, to see the beauty in every day, recognise their needs and values and how they may have changed, re-discover who they are and what they love, find balance with their health, work, family and life and always know that whatever life brings happiness is a choice.

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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.

 

Top Tips for Being a Professional Patient

Help wanted. Hours must be flexible, pay poor. This job will interfere with your social life. Those with a morbid fear of doctors need not apply. The sheer amount of time that I spend ferrying myself or the kids to and from hospital appointments is insane.  With...

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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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