Image: Google images
It wasn't until I found the perfect picture on Google images that I realised I have never written a detailed post on the one saying that drives me mad when you live with an 'invisible illness'. Last year I quickly touched on the subject but it is still a matter that arises a lot and one that I really struggle to accept. The comments based upon invisble illness just really have a way of getting to me. Firstly, I really don't like the term, invisible illness. I think it can certainly give a misinterpretation of our health problems. 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. Either, 'Oh, well you don't look ill or disabled at all' or 'You would never know there was anything wrong with you, Nancy'. My mum reassures me that they don't know what to say, are just being polite and think that actually, I do look quite frail and poorly. I cant say I agree, I see people who genuinely don't understand how horrible, disabling and complex Ehlers Danlos Syndrome is or how horrifically it can effect the human body. No matter how hard I try in the moment those comments are said to try to explain my situation and what this illness actually is, it doesn't seem to have much effect based on my physical looks. Having been chronically ill for 7 or so years now, I think I would rather somebody actually say to me that I didn't look great because at least then it would reflect how I am feeling. I have been ill for such a long time now that I often think people forget this just based on looking relatively well 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'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 we are trying to accept everyday. Hearing these comments makes it more difficult to digest.
It's as if these comments then leave me feeling really defensive. 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. 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. The person who is trying their best to hide the pain to try to please and be normal for those around them. This also helps make them feel less awkward, it's 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.
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, well I couldn't disagree more! Ignorance is not bliss when you live with a chronic pain condition. Ignorance to these rare illnesses causes more isolation for those facing the battle.
I think my issues lies with the lack of awareness for this 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 relatatiom to what a person may be going through in some way, shape or form. This is through the power of awareness on a large scale. 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;
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
x
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