Over the last few years, I have been diagnosed with two, somewhat rare (basically under diagnosed and little known about them) conditions - Postural Orthostatic Tachycardia Syndrome (POTs) and Ehlers Danlos Syndrome (EDS). They both are difficult conditions to live with and although mine are milder compared to others, they still have a major impact on my life in terms of their symptoms and have unfortunately limited parts of my life. Doctors didn't want to officially diagnose me in fear I would develop depression (been there, done that already!).
I always knew something was wrong, as I have been in and out of physiotherapy since I was 9, but my diagnoses were still a bit of a surprise. I have been to physiotherapy twice this year alone and have an orthopaedic appointment lined up because my condition has presented a new problem; my joints are trapping my nerves which have, on occasion, caused me great agony and disrupted my sleep. I see a specialist every few months and see a rheumatologist every year. Pretty much any specialist with "ologist" at the end, I have likely seen!
For a long time, I didn't realise that what I was experiencing was chronic pain and fatigue. Only in the last year have I fully realised that other people my age (and much older) didn't feel how I felt. And yes, I did ask people if they were also in pain like I was or if anything was aching and yes, I often got odd looks and one or two ignorant remarks about it. It's an unusual feeling you get when you realise this; almost like your whole life is a lie, and then you ask "why me?" I never thought at my age, I would be crying myself to sleep at night over my health but I try not to focus too much on it.
I never thought at my age, I would be crying myself to sleep at night over my health...
I recently had a bad experience with my chronic pain when I was on holiday and I wanted to share how I feel about it and point out an irony.
My parents and I went to Chatsworth House. My dad is almost intentionally oblivious to my conditions, has not much to say about them and views me as perfectly normal. I do look normal, which is why my conditions are considered 'invisible illnesses'. But honestly, support from family and friends really makes a huge difference. My mum is very supportive of me... to a degree.
So we had walked around for about an hour or so (that seems to be my limit) and as I was coming out of the gift shop, pain encroached on me very quickly. We left the shop to go and get something to eat and I was now extremely uncomfortable. My whole body was in pain and I desperately needed to sit somewhere but I was forced to stand because all the seats were taken. I went for tables, but they were immediately taken by someone closer. I was now stood in front of a large number of people as they sat down, unaware that this young looking woman was in so much pain and was close to tears.
support from family and friends really makes a huge difference.
We ended up having to sit on an uncomfortable, brick wall. Sitting down gives me a level of relief but the pain is still there and it makes me so grouchy and frustrated. I dosed up on painkillers but I knew we had another long walk around the acres of garden. I didn't want to miss out on the gardens, but I physically couldn't continue in the pain I was in and my dad wasn't going to pay for a trip around on a train, so I started suggesting looking for a wheelchair.
Now this is something I rarely ask for- it was only the second time I've ever asked for one and is only requested in severe instances. Both times, I didn't get one. My parents seem to have a negative view about it and my mum's response was "Dad wouldn't allow that." Her usual response is "go and sit in the car", but this doesn't do anything but exclude me and would only make me feel worse.
My dad didn't respond to her at all. He didn't say one word to me or console me, not that I was expecting anything.
I was now stood in front of a large number of people as they sat down, unaware that this young looking woman was in so much pain and was close to tears.
Thankfully, after about 20 minutes, the painkillers had kicked in and I felt mentally and physically better and continued on (thank goodness for painkillers!). If I didn't have any medication, I wouldn't have been able to continue, unless being pushed in a wheel chair and as my parents seem so against it, I would've lost an experience for a chance to sit in the car on my own.
When I was standing in front of all of those, mainly elderly, people, I couldn't help but think of the irony of the situation. The public view the elderly as those who need all the support and care. On a bus, the elderly would get a seat before me. If there was only one wheelchair, an elderly person would've got the it instead of me. You can be elderly but in relatively good health, but you can be young and be born with poor health. It also reminded me that everyone has a battle within them, that is well hidden and not plain to see.
To them, I was just another tourist, standing around. To me, I was shedding tears behind my sunglasses, struggling with my own body - fighting a never ending battle.
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