What on earth is scleroderma anyway? I’ve talked a lot about the condition on my blog and social media, but I don’t think I’ve ever properly explained what on earth it is. So here goes…
Scleroderma is an uncommon condition that results in hard, thickened areas of skin and sometimes causes problems with organs and blood vessels. It is caused by the immune system mistakenly attacking the connective tissue under the skin and around internal organs, joints and blood vessels.
There are several different types, including generalised, diffuse, localised and linear, and it often impacts patients very differently. Roughly 19,000 people in the UK have been diagnosed with scleroderma and 2.5 million live with it worldwide.
Hardening skin is one of the first noticeable symptoms of the condition, as the body produces too much collagen. This excess of collagen can affect the skin, joints, tendons and internal organs. It sometimes causes significant scarring and stops the affected parts from functioning normally.
There are lots of conditions that sometimes come hand in hand with scleroderma, including irritable bowel syndrome, Raynaud’s, fibromyalgia and chronic fatigue syndrome. Living with the condition is unpredictable and you never really know what’s coming round the corner.
I’ve been in remission where the scarring stops developing, but the other symptoms of joint pain, fatigue and stiffness persist, and I’ve had periods of extremely bad flare-ups. You learn to take whatever comes your way and handle it as gracefully as possible.
Everything changes when you have a chronic illness, especially one that can get progressively worse. For me, I’ve lost the energy that used to be an intrinsic part of my life and I’ve had to accept that I can’t be the party animal or the workaholic anymore. I had to adjust my entire life to accommodate this illness in my life.
Whilst it might sound scary to read about, the condition is manageable. I pour my time into intense physiotherapy, I use travel support from the government to get me into work and go through a ton of moisturiser every week. Life is not easy with any chronic illness but you learn very quickly to get on with it. You can’t just lie down and give up, time keeps on trickling away whether you’re healthy or not.
Many people see illness or disability as something to be pitied. They believe that someone can’t possibly be as happy as them if they have a disability or an illness to contend with. Disabled and sick children are told that their lives won’t mean as much because they’re opportunities are limited. We are constantly bombarded with messaging telling us that health equals happiness. Spoiler alert guys – it doesn’t!
My main goal in life is simple, live a happy and fulfilled life. Being sick doesn’t take anything away from that, it just puts more obstacles in my way, all of which I am ready to hurdle. There may be tragedy in illness, but there is also strength. We have to fight every day of our lives and ultimately we learn to use our disabilities to empower our lives, not restrict them.
Scleroderma is a complex illness that still needs figuring out, but in the meantime I’m planning on living a full life raising awareness of chronic illness and proving everyone who ever doubted my ability to thrive wrong!