Discovering You Have a Chronic Health Condition Can Be Scary!
It can be scary finding out that you have a major chronic disorder. You no longer have to “feel like a crazy person who is in pain”!
Writer, photographer, reluctant commuter. Post originally on the Huffington Post Blog.
“Hypermobility Syndrome, also known as Ehlers Danlos Syndrome, is a connective tissue disorder characterised by highly flexible joints and chronic pain, along with a wide variety of other symptoms. It is difficult to diagnose and is still quite poorly understood by many in the medical community. I’d never even heard of it until I was diagnosed by chance, although I’d lived with the symptoms for most of my life.
I got my hypermobility diagnosis almost by accident when I was 25 – we had a resident physio service at work that I went to see with back pain. I’d suffered from various medical problems for years but the back pain was new, so I asked her if she could give me some tips for relief. Instead she got me to walk up and down, looked at my feet, checked my knees and wrists, got me to bend my fingers back and asked if I had asthma, IBS, anxiety and if I had a lot of accidents. Then she cheerily told me I probably had EDS, and suggested I go and see my GP. When I read up on the condition, it transpired that my joint pain was caused by hyper flexibility, meaning that my joints lacked support from ligaments, causing misalignment and chronic pain.
I’d been extremely flexible as a child, displaying party tricks like double-jointed thumbs and lying on my stomach to touch my nose with my toes. I was also a slow walker, got tired easily and whinged a lot about everything hurting – which my parents and teachers put down to “growing pains” and a touch of hypochondria. I was also very accident prone and chronically clumsy, always falling over or walking into things. As I reached my teens this got worse – I’ve honestly lost count of the number of times I’ve ‘turned’ my ankles, and I stopped doing a lot of the activities I’d enjoyed like horse riding, swimming and dancing. I put on weight, and by the time I was at university I was suffering from chronic depression. Other seemingly random things appeared too, like asthma, restless legs, irritable bowel syndrome, tendinitis and low blood pressure. I’d seen GPs and physiotherapists for various reasons but none of them ever realised it was all related. I began to believe it was all in my head. In fact, a lot of people are told the illness is fabricated or psychosomatic, or that their symptoms are a result of stress or depression (when it is often the opposite!)
Discovering you have a chronic health condition can be scary, but it’s like finally having the light switched on after wandering around in the dark for years. I no longer felt like a crazy person, I had a reason to be tired all the time, I wasn’t imagining more joint pain during my periods and my clumsiness was actually poor proprioception (awareness of your joint positions). I also learned I might have problems with pregnancy, childbirth, hernias and incontinence in the future, and that I should probably avoid all hormonal contraception. I could even end up in a wheelchair. Living with chronic pain is exhausting, and some days every step I take feels like walking on broken glass. A key part of managing it is a technique called ‘pacing’, where you limit what you do learn to listen to your body. Trying to maintain an exercise regime can feel impossible, but is vital to staying healthy and building up the right muscles. Commuting is exhausting too, but I’m enormously grateful to be able to work full time as many people with EDS are unable to.
Research into the condition is still limited and there aren’t many specialists yet, but I have found a valuable resource in the Hypermobility Syndrome Association, a charity that raises awareness and gives advice to sufferers. EDS affects at least 1 in 5000 people in the UK but research shows that this is probably an underestimate due to mis or under-diagnosis. Gaining a diagnosis, finding an understanding GP, waiting for referral to physiotherapists and specialists can all take years. The combination of long term pain, chronic fatigue and not being believed often leads to depression and anxiety, to weight gain due to the pain of movement, and isolation from others. I’ve had to accept that I can’t live a pace of life that my friends can, although sometimes they find this hard to understand. There’s no cure, treatment just involves managing the symptoms – which can include seeing a rheumatologist, a pain management specialist, a counsellor, a physiotherapist or even a surgeon. It’s a lifelong condition, but it doesn’t feel so much like a life sentence anymore.”
It is easier to manage our daily life once we have a label and understanding for what is causing our pain.
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