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

Join The Community

Chronically Empowered is a community of women who have chronic illness.

You may feel like no-one understands what it’s like living with your chronic illness or worrying everyday about your kids. That you are hanging on by a thread or the future may feel a little uncertain. In The Tribe we get that.

You value life and want to be the best version of you. To manage your symptoms effectively so that you can live your best life. 

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!

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Overcoming Imposter Syndrome – Journaling your feelings

Overcoming Imposter Syndrome – Journaling your feelings

Last week I spoke about Imposter Syndrome, you can read about it here – What is Imposter syndrome and Do I have it?

The first step in overcoming Imposter Syndrome is to acknowledge what you’re feeling, and why. Start by keeping a journal or writing down your thoughts and feelings. Whenever you experience feelings of self-doubt or inadequacy, write them down, and explain why you’re feeling this way. Be as specific as possible about each situation.

One great way to overcome your Imposter is to write a letter to your inner child or younger self. To tell yourself that it is OK to try, to make mistakes and to learn. To try new things and to be successful. Ask her why she feels the way she does about what she has achieved… dig deep. Go back to where it all began. What made you believe that you are unworthy of greatness. Feel the emotions and write them all down to get them out, what thoughts come up?

When you are done you may want to destroy the piece of paper. Or, refer back to it to show you how far the you have come. What ever you choose to do, breathe easy. That is past. 

I have done this a few times, for me looking back at a time that was tough can be a cathartic and healing process, like journaling, it helps to get the emotions surrounding different experiences out and to process them. It helps me to put things in perspective. Having multiple diagnoses there have been times when I have really doubted myself. As a young teacher, unable to work anymore.  As a new mother struggling to care for my young child.  When diagnosis after diagnosis hit our family and I doubted that I had ‘what it takes’, sometimes crippled by fear of what lay ahead for me. 

I wrote this 4 years ago, triggered as my first child became a teenager, on his next birthday he will become a man. It is as it is. Raw and un-edited.

 

I did not know when I wrote this that I was yet to face my hardest test when my son became bed bound for a time with Myalgic encephalomyelitis. The strategies that I have learnt during my time as a mum: mastering my mindset, developing emotional intelligence and generally becoming emotionally tough, have hands down helped me to cope with these unexpected events. Reflecting back helps me to know how far that I have come and what I have achieved.  

 

Dear Younger Self

Thirteen years ago I gave birth to my first child, as he enters adolescence (and I wonder how that could be possible) I realise a lot has changed and there is much that I have had to work out for myself.  So I decided to write my 2004 pregnant self a letter sharing what I have learnt so far.

 
Dear Sarah
 

Forget birthing plans, a water birth, scented candles and nice relaxing music playing in the background, the only thing that you need to focus on when you go into labour is your breath.  It will be an ally silently holding your hand when things get tough. This may be your first baby but let your body speak to you and listen carefully as it whispers. Trust and stand up for yourself, don’t be so nice.  The nurses won’t actually believe that your labour is established because you cope so well and you labour so quickly.  There will be panic, baby will be distressed but stay clam, focus on what you need to do you will soon hold him in your arms.  And it hurts, especially with zero pain relief but one day you will understand the joy in childbirth, I promise.

Nothing will prepare you for the overwhelming love that you feel for your baby or the paralysing tiredness that you will never seem to shake.  Make the most of the first few months because after that point your body will start to fall apart. Chronic pain and fatigue will hit you like a truck and you will be weak.  Accept help and don’t be so proud.  Letting someone else cook dinner once a week does not make you a bad wife or mum, just tell someone that it is hard.

The niggly pain that you have in your foot will leave you almost incapable of walking soon and will take 9 months and a surgery to resolve.  After the operation you will wake up with a smile so broad from the relief of that pain that you actually cry.  The tests into the problem will leave you with a diagnosis of the neuromuscular disease, Charcot Marie Tooth, take time to come to terms with this, process it, grieve, don’t rush it, you need this process in order to move on.  At this point it will seem like your life starts to unravel, to be honest it does.  It steals your career and you will dislocate merely as the bed covers lightly brush across your knee, you will get to the point where walking on grass is impossible without falling and having more dislocations, life gets harder.  You will feel as if you are being stripped of your mobility, your dreams, your friends, your goals and your identity.

It gets better.  You will realise that teaching is a job, that you are replaceable and that’s OK.  Where you matter most is at home with your family.  You will learn that strength is not merely a physical pursuit it comes from within. You will develop perseverance and patience, when things are tough they will improve. You will learn to think out of the box and find solutions when problems present themselves, the rewards can be so much more when you work harder for something. You will learn to value what is dear to you and treasure it with all of your heart. And you will learn intrinsically not to judge others because you never know their story. You will become a better person.

You will also discover that what you have been doing for years is pacing your life without even realising it. Those naps every day after work before Dave gets home, 10 minutes on the sofa flicking through a magazine, takeaways a couple of times a week. You just can’t do that now that you have another individual relying on you with every inch of their being.  Fatigue will hit you, time and time again. There will be points in your life when you will not get out of bed and wash for days or weeks at a time.  Where you will physically collapse unable to actually put one foot in front of the other. Where you wonder if it will ever improve and how? It will get better, slowly. You are a warrior now. Pacing will become your friend again but it will take nearly a decade to understand its impact on your body and make it work in your new life.

After two and a half years when your family increases, be warned, this labour will be even quicker. You do make it to the hospital, but only just, you lose a lot of blood, consciousness and go into shock.  It will take another six or seven years to learn that you have Ehlers-Danlos syndrome and POTS and that they are the cause of this. The same pattern will continue after baby number two, pain and fatigue will be relentless you will visit more doctors and hospitals in the search for answers than you ever thought possible. Where you once navigated London by the night clubs and shopping hubs you will now have a mental map of the leading doctors and teaching hospitals. Some of these doctors won’t believe you, some will but will be at a loss to know where to start or how to help. When you stumble upon professor Rodney Grahame the pieces will finally start to fall into pace. Although a relief, an EDS diagnosis is only the start of the journey, you will spend the rest of your life learning how to live in harmony with these conditions, managing them, trying to be the boss. Researching and managing their impact will become a full time job. Apart from your husband no one will really see the effort involved in keeping up your normal appearance to the outside world. This new life, while different can be fantastic, just take a breath and learn to appreciate the joy in every day.

You discover the beauty of childbirth when your daughter comes into the world. A peaceful home birth surrounded by those that you love and a midwife that you trust. Breathe it in, enjoy it. She is your little miracle and will teach you even more about strength and perseverance than you ever believed possible. As your children grow you will start to realise that they have their own mix of things going on for them and pain and fatigue will sadly become a daily part of their lives too. This is the hardest part of your life and I can’t ever promise that watching them in pain and to struggle will get any easier. You are a zebra mum and you will fight for their care with every last once of your being because you love them so fiercely. You won’t believe this now but because of them and because of your passion you will have an inherent need to give back, you will be lecturing at Brunel University and helping families with your experiences from all over the world.

journal entry about overcoming imposter syndrome; overcoming obstacles and facing fears

Once your children are at school you will face some of the most challenging times of your life; trusting others with the most important people in your world and to manage their health when they are often not willing or prepared to step up. This will be the most stressful thing that you ever do.  There will be ignorance and ego’s of which you have no control. But there will also be angels disguised as teachers along this path that shine light in the darkness. Your children will amaze you every day with their achievements and will prove that they are much, much more than their illnesses and how they feel.

Learn to eat well, for you this means gluten free. Stay hydrated and exercise often even if every ounce of your body is screaming no. Teaching this to your children will be the  greatest gift that you can give to them. There will be non-believers, naysayers; people with far too much opinion about what they think is or isn’t wrong with you. There will be people that will talk about you behind your back and even to your face. Don’t let these people steal your joy.  Don’t waste your time trying to convince them what is fact, you are not responsible for their thought processes. Use your energy on the important things, wellbeing, happiness and enjoying time with your friends and family.  Live.

While at points along this journey you will feel like your life is unravelling it will actually be falling into place. As friendships fade they will be replaced by new ones, stronger ones, with people you adore and who adore you for exactly who you are. Your illness will not be an issue at all to them, you are just you and you happen to have an illness. And your David, he is just as amazing now as he was then. In fact even more so.

With love,

Sarah xox

 
Ps. On the 16/8/16 Do yourself a favour and take a picnic.  It will save you a swim in the Thames.
Pps. Remember that you can still be assertive and nice, too much nice and people take advantage.
Ppps. Whatever happens keep smiling.
 
 
Could you write to your younger self at a time in your life that was stressful, like a chronic illness diagnosis, or to your inner child? Looking back and being kind to yourself can be helpful.
 

What could you reflect back on? What made you feel unworthy of your greatness? What could you tell your younger self? What have you learnt? What new things do you want to try? 

Let me know what comes up for you? 

 

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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