Robyn Lawrence

Scleroderma is a disease that can be both disabling and fatal, and yet this rare disorder often goes unrecognised as it affects as little as 19,000 people in the UK. Throughout June, sufferers are encouraged to share their stories, to help increase our collective understanding and highlight the symptoms to look out for.

The NHS defines scleroderma as the name for a “range of conditions” that affect the immune system and leads to areas of the skin becoming thick and hard. Scleroderma can also cause problems with the blood vessels, muscles, and internal organs, such as the heart, lungs, or kidneys.

Other common symptoms include:

  • Hair loss
  • Reduced sweating
  • Dry and itchy skin
  • Changes in skin colour
  • Stiff joints
  • Muscle weakness

There are two main forms of scleroderma, localised and systemic sclerosis. Localised scleroderma, also known as morphea predominantly affects the skin and the areas under it, such as muscle and bone. In contrast, systemic sclerosis may affect blood circulation and internal organs, in addition to the skin.

These two categories can be broken down further, into different types of localised scleroderma and systemic sclerosis. Some of these can eventually improve on their own, but others may be life-threatening.

Whilst there is no known cure for scleroderma, symptoms can be managed through different medical treatments.

Living with a skin condition

The prospect of not being in control of your health is frightening, especially when your condition is difficult to hide from wandering eyes. The urge to cover up is like an itch that won’t go away. It’s a voice that tells you ‘they’re staring’ without you having to look first.

In a society that preaches superficial standards of beauty, scarring is not often deemed to be beautiful. The feeling of looking different becomes ingrained. A seed planted in our minds to remind us that it is only acceptable to look a certain type of way.

“Those with common conditions like acne and eczema still face scrutiny on a regular basis.”

The stigmatisation of skin conditions is widespread and being on the receiving end is a familiar experience for many people. Those with common conditions like acne and eczema still face scrutiny on a regular basis. But when it comes to a complex, little-known and poorly-understood condition such as scleroderma, the stigma can feel ten times worse.

Every experience of scleroderma is different. It depends on which type of you have, how severe it is and which parts of the body are affected. Morphea can manifest in different sizes and locations. Whether somebody has a small patch of affected skin or a larger one, their emotional responses to it are all valid.

My experience with morphea

After noticing some unusual marks on my arm and hand, I was diagnosed with localised scleroderma at sixteen years old.

When you are thrust into a world of hospital visits and medication your sense of identity can soon feel lost. You become defined as a patient, stuck within the parameters of the condition you are being treated for.

“I thought it was the most obvious thing about my body.”

During the early stages of my diagnosis, my confidence decreased dramatically. Even if people said it wasn’t noticeable, it didn’t take away from the fact I thought it was the most obvious thing about my body. I thought wearing long sleeves would be my new normal. The thought of someone pointing out my scarring would make my heart pound. The truth is, no matter how big your scar is, or where it came from, the effect it has on your self-esteem is staggering.

I was very lucky that after some intensive treatment, the scleroderma had become inactive and the marks had begun to fade. Despite the good news, I knew my arms would be left with permanent scarring. People told me that the blotches were hardly noticeable anymore. But I know that if I was stuck with an incurable skin condition, I had to learn to accept it, one way or another.

Taking care of your skin, and your mindset

I’d like to share some tips that helped me on my scleroderma journey, in case anybody else is feeling lost.

One of the biggest things that helped me accept my condition was simply looking at it and acknowledging its presence on my body. So that’s my big advice to anyone else – take a few moments to look at your skin in the mirror every day. Realising that it’s not going anywhere helps you accept that your skin isn’t something to be afraid of.

I would also suggest getting more comfortable with touching your affected area of skin. Simply applying moisturiser to the area every day can help you feel more comfortable looking at it. With scleroderma, moisturising can also help the hardened skin feel softer.

“If it wasn’t your skin, it would definitely be something else.”

If you’re worried about judgement from other people, try showing the affected skin to your loved ones first. Showing it to people who you know will be supportive no matter what can help your confidence.

When other people do see your skin, you shouldn’t feel the need to explain what it is. Learning to love your scars is a process, so don’t feel pressured to share information if you aren’t ready.

Another thing I would suggest is to let go of the idea of looking ‘perfect’. Unfortunately, everybody will find something to judge you on. If it wasn’t your skin, it would definitely be something else. So why waste your time worrying about what they will think of it?

On that note, once you’re feeling more comfortable, you should embrace it as much as possible! Wear those clothes you love but currently feel you can’t wear. If you love the clothes, it shouldn’t matter whether your affected skin is showing. It’s a part of you, and you deserve to feel good as your whole self. 

Read Next:

Featured image courtesy of  National Cancer Institute via Unsplash. No changes were made to this image. Image license found here.

Currently studying BA Journalism and Media at the University of Leeds. Love writing about nature, all things lifestyle and discussing important topics!

Leave a Reply

Your email address will not be published. Required fields are marked *