Wednesday, 2 July 2014

'You would never know you had an illness, you look so well'.....Frustrationsof an Invisible Illness

Image: Google images

I recently stumbled upon the perfect quote to describe what it feels like to live with an invisible illness. I then realised that I have never actually written a detailed post on the one saying that drives me mad as an individual who loves with a so called, 'invisible illness'. Last year, I quickly touched on the subject yet it is still a matter that arises all too frequently and truly is, one that I really struggle to accept. The comments you are taken aback by are usually based upon someone's perspective of invisble illness, which can be hurtful for those living with a rare diagnosis. Firstly, I really don't like the term, invisible illness. I think it can certainly give a misinterpretation of our health problems and be made to seem like our health issues our invisible and made up. Secondly, if you were to turn our bodies inside out, they would tell a completely different story!

Every time I see a distant relative, friend, or even a friends parent, they always have the same thing to say to me. Typically along the lines of, 'Oh, well you don't look like you have an illness', 'Disabled, are you sure' or 'You would never know there was anything wrong with you, Nancy. You look so well'. My Mum reassures me that they do not know what to say or how to approach the subject of my invisible illness. They are just being polite and inwardly agree that I do actually look quite frail and poorly, however this is just a way of giving me a boost. I was notorious for biting my tongue, typically because I had no idea how to explain what was happening within my health circumstances. Now, I just shudder when I hear the quote. I cant say I agree with Mums views. I see people who genuinely do not understand how horrible, disabling and complex Ehlers Danlos Syndrome and my overlapping illnesses are nor how horrifically these diseases can effect the human body. Despite being a young woman, I am still living in chronic pain on a disabling scale. No matter how hard I try to redirect the received comment to raise awareness, usually by explaining how unfortunate it can feel to have an invisible illness at times, it doesn't seem to have much effect based on my physical looks. Why does the way I look in myself conclude how I must be feeling?  Based upon a non existent pain scale measured up by someone who is not living with my illness.n

Having been chronically ill for 8 or so years now, I think I would rather somebody actually say to me that I did not look great because at least then it would reflect how I am feeling. It would reflect the lifestyle I have to live in combination of having these overlapping illnesses too. I have been ill for such a long time now that I often think people forget this just based upon looking relatively well, or perhaps because I've made a slight effort to look presentable. I get so tired of having to keep telling people that its a chronic illness and that means I will have it for life. It is also incurable meaning that it will not disappear just because I have applied a face full of makeup or slapped a smile on. It's not a cold or the flu that leaves you in a week with the help of some antibiotics. It's a serious, life consuming, long term illness that many in my position are trying their absolute best to accept everyday. Hearing these comments, makes you feel like you have to fight to be believed. I know we do not have to justify our pain to people but the bottom line is we are chronically ill and whilst it should not be the focus, it should not be dismissed based upon our looks.

 It is as if these kind of comments have the capacity to leave me feeling really defensive inside. I sadly feel the need to justify my valid, chronic and consuming illness because an opinion has been based on how I physically look. It doesn't seem right that a judgement of my pain levels or the amount I may be struggling can be over ruled by the mask and smile I have put on. This is usually a bit of make up to take me from looking ill to slightly less scary looking. I'm then usually left reeling with thoughts on how misjudged I feel by others comments which they may not even be aware they are making or possibly even hurting my feelings by saying. I know this is an issue that unfortunately upsets and distresses many in chronic illness.

I think its really quite sad that Ehlers Danlos is such a complex illness that leaves you bed ridden, isolated, forced to attend never ending trips to hospital, yet people never think it can be this bad as a decision is made purely based on your looks. Let alone adding a few more rare illnesses on top of that volcano. They don't see the tears, dislocations, subluxations, fatigue, amount of medications piled up on the side you take daily, long nights where pain wont let you sleep, the amount of effort it has taken for you to stand in front of them. However, most importantly, they don't see or feel the PAIN you are experiencing every single minute of the day. They just see the presented 'fake' you that smiles to hide your sadness and depression illness has consumed you with. The person who pretends everything is OK or who tries their best to not draw attention to the situation that is quite frankly, consuming their entire existence. The person who is trying their best to hide the pain to try to please and be normal for those around them. This also is something that essentially, helps them feel less awkward around someone who has an incurable illness. It can be  hard to grin and bare it, but we do so in order to not draw attention to our situations or be completely pitied. When in fact this false reality couldn't be further from the truth. We struggle with coping with pain each and every single day, where pain levels only gets worse from sunrise to sunset. We yearn for support and for outsiders to get it to help us raise awareness of how drastically our lives have changed at the helm of these illnesses.

Its hard enough having to cope with pain everyday but when you are coping with a chronic illness that only a small minority of the world actually know about, its enough to make me want to cry and scream all at once. Whoever came up with the term ignorance is bliss, I couldn't disagree more! The dismissal of illnesses just bevause their is lack of awareness of them has been prejudice many of us will continue to face for years to come. Ignorance is not bliss when you live with a chronic pain condition. Ignorance towards these rare illnesses causes more isolation for those facing the battle.

I think a main issues for many lies within the lack of awareness for our condition. You can mention some well globalised illnesses and 99.9% of the population would have heard of them. They will know of the devastations they bring amongst families, the symptoms that make up the illnesses and they may instantly feel a connection or relariom to what a person may be going through in some way, shape or form. They will have empathy and offer support in ways they can. This is through the power of awareness on a large scale, the power of understand the devastation and heartache an illness can cause a person, a family. To think that if we were to get an ounce of the effort and awareness, time and medical knowledge some of the larger based health charities get, the impact could be huge for the sufferers. It would maybe make the general public start listening, increase awareness within the medical profession, which could potentially lead to more patients being diagnosed sooner, as well as being a positive step for those already diagnoised. I know by experience that my diagnosis journey took me from the age of 9 to 16. That is 7 years, and Ehlers Danlos was only mentioned by ONE medical professional. On so many occasions , my pain and symptoms were dismissed by doctors due to lack of awareness. Realising just how rare this illness is, I often become so overwhelmed by the amount of people who may be undiagnosed and in the dark trying to piece all of their pain puzzle together. It's hard being in the vicious circle of being undiagnosed and a medical mystery. 

An illness that affects your life to the point where pain cannot be controlled, dictates what you can and can't manage from one hour to the next needs so much more awareness, in my opinion.  Those living this unsettled life deserve to have confidence that there is knowledge, awareness and progress being made, but sadly, this is not the case.

How can an illness such as Ehlers Danlos Syndrome be so powerful to make an individual feel like their entire bodies interior and exterior is breaking down everyday, incurable, with barely any doctors around the country to help a patient dealing with the syndrome and yet there be hardly any awareness in this world for those who sufferer with the condition. It just doesn't make sense to me and the further it has a grip on my health and life the more it angers me for those living with the complex illness. When you have to spend everyday confined to the house or your bed with pain, fatigue and arising symptoms, the lack of awareness for a life changing illness is something that just is not fair.

When you Google the term 'Ehlers Danlos Syndrome' you are usually given the most basic of symptom results as well as a few pictures of someone bending their fingers back and stretching their skin like a party trick, which infuriates me! 'A lack of/ faulty collagen that causes stretchy and bruised skin and flexible and unstable joints'. This is a typical overall summary when internet searched of basic assumed symptoms. The most basic symptoms could not be further from the actual truth and those with Ehlers Danlos will know these symptoms are the least of their worries. The collagen fault is the key to the problems that stem from this. Only when you fully research into EDS, usually information found on medical forums, do you find out the other more difficult and alarming issues that patients deal with on a daily basis such as;

Gastrointestinal problems, pseudo blockage, autonomic nervous system dysfunction (affects the bowel, bladder, heart and blood pressure from working correctly), organ prolapses, joint dislocations and subluxations, muscle spasms, chronic fatigue, cross over illnesses such as postural orthostatic tachycardia syndrome, fibromyalgia, ME/CFS, MCAD, inflammation and swellings, migraines, dizziness, low bone density/brittle bones, curvature of the spine, dental problems, low immune system with inability to clear infection, fragile blood vessels and body tissue, poor wound healing as well as many other symptoms and cross over illnesses that come hand in hand with EDS.

Ehlers Danlos has a devastating effect on patients, as well as their families. So many of life's aspects are drastically changed, adapted and contrast to those of similar age. My hopes for the future are that EDS has more awareness globally to enable diagnosis sooner and provide the support and help needed to those suffering with the disabling syndrome.

Make the invisible, visible!
For any chronic illness

Just a little note to say that today is also my blogs one year anniversary.
I hope that by talking of my own experiences with Ehlers Danlos Syndrome I have made others feel not so alone in their own journey. I'm also super thankful to everyone who has been brave enough to share their own stories with me in the process as it really helps me get through my days.
Wishing you all health and happiness


  1. This comment has been removed by the author.

  2. Thank you soooooooo much! You are one of my favorite bloggers of all time! It means the world to me that you commented. Thanks again!

    Never Forget To Smile.

  3. Happy 1 year anniversary Nancy.
    Your blog will help peoples awareness of Ehlers Danlos and the devastating affect it has much better than some of the more medical sites.
    Keep smiling!
    Jane ( Georges mum )

    1. Hi Jane, how strange that you left me a comment today! Myself and my Mum were speaking of you yesterday. We are thinking of you and your family in the lead up to Georges anniversary.
      Thank you for your kind comment, I hope it is helping some people as well as creating awareness
      Love, Nancy xx

  4. Hi my name is Lauren and I am 14. I have gastroparesis cyclical vomiting syndrome abdominal migraines, migraines fibromyalgia among other things. I have been diagnosed with pretty much everything under the sun. Since I was little I have always had very weak ankles a tendency to bruise, and have had skin that eaisly scares. I was wondering how you got diagnosed with EDS.lately my doctors have have no idea what has been going on with my health. in early March I had a gastric pacemaker installed for my gastroparesis. It has helped about 40% of my nausea and I've been able to eat more normally since. The Gastro pacemakers are made by Medtronic and some gastroenterologists can install them.
    I hope your health improved in this new year thanks so much,

  5. Hi. I stumbled on your blog from a twitter post. You have a really amazing 'voice' for advocating for yourself and raising awareness. You really drew me in, and I love the fight you have, though I know, for myself at least, sometimes I don't believe I'm fighting back. I get so tired like most of us, I know. I'm mainly commenting because I wanted to reinforce you and tell you to keep writing and being a speaker for those that can't or don't know how... when you can of course. This post alone really spoke to me. You're pretty amazing.

    1. Hi there,
      Thank you so much for leaving me such a lovely comment. I really appreciate your feedback and kind words, it makes these posts worth sharing. You are completely right there, sometimes I don’t feel the progression or even have the will to fight this illness, it drains you in every way possible for us all I'm sure. However what keeps me going and sharing these posts is the fact that it is genetic, I would hate to see anyone in my family go through what I have, in some ways I’d rather be ill instead of any of them because it’s all I've known. I’d be devastated to see those I love in pain. But I feel that in order for the younger generation to get anywhere in years to come with these rare illnesses (especially our family members) I feel the awareness is really needed for their own battles and support. If all of us who have experiences with chronic illness try to share what we have been through first hand, especially young people I truly hope we can make a change for the better.

      Thank you once again for your encouragement and for taking the time to read my post, you are amazing too! :)
      Nancy :)

  6. Hi, I've recently stumbled across your blog and think it's really good, especially for young people who often find themselves thrust suddenly into a world they know nothing about. Undoubtedly, they will find more answers and understanding on here than in the leaflets given to them by doctor after doctor. It took years for me to be able to publish 'before' and 'after' photos together, but I did it last year when I also wrote about 'invisible illness' and I thought I'd share the post here:

    Best wishes & keep on blogging :-)

  7. It was a very good post indeed. I thoroughly enjoyed reading it in my lunch time. Will surely come and visit this blog more often. Thanks for sharing. Jawahar Thomas

  8. This is very nice article and it is very useful and knowledgeable post.

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