Maxine Jackson's story

Hairdresser Maxine Jackson, 49, was diagnosed with systemic sclerosis in May 2016, and also has several other related conditions. Despite her sensitivity to cold and decreased dexterity, she is determined to live her life to the fullest and carry on her passion – styling hair.

How do your conditions affect you on a daily basis?

They impact me in everything I do. It depends on the day though. It's difficult getting dressed, having a social life and everything in between. I'm just much slower, everything takes longer and it needs to be planned in advance. Even having a shower, getting dressed and getting ready to go out, takes a lot longer than it used to.

How does it impact your job?

I've lost a lot of clients due to the condition and it's impacted my work hugely. When I have days that it badly affects my wrists and hands, I struggle to twirl the brush, hold the hairdryer or hold heating tongs. Everything takes me longer now, as I have to be extra careful and by the time I finish working, I'm in so much pain afterwards and my feet, knees and legs are swollen. I've gone from working five days a week to two or three days a week, because I can't do the hours that I used to.

How does it make you feel?

More so when I was on medication, it was depressing and it makes you think about death a lot. For 47 years I was in pretty good health, I've only had flu once in my life, but since I've been ill, I've had chest, throat infections and more. I went from being really healthy, working out three or four times a week, to struggling to walk down a flight of stairs without resting at the bottom. I've been depressed but now I'm focusing on the positive that I'm still here and able to carry on.

What keeps you motivated to push through?

Taking back a bit of control, in regards to my diet, has helped. Looking at the bright side of everything keeps me going, I'm still here and I can still do things, even if it takes me longer. I found a lot of strength from looking after my mum until she passed. She was such a strong person and never wanted anyone to do anything for her, so I've kind of got her attitude. Talking about it helps a lot too. I'm more open now. For example, my sister used to cry a lot whenever I got new test results and then I'd end up consoling her, so I've asked her to try and keep it together at appointments because her being positive and being strong helps me to continue.

What do you think are some of the misconceptions around the condition?

Just because a person looks healthy, doesn't mean they are healthy. It's a severe condition, but because I appear to cope well to other people, they don't realise how much pain you're in on a daily basis. It's so crippling and it's so frustrating when people say,'oh you look so well', when it's not the case. They just think it's a skin condition that only alters your outer appearance. They have no idea that this condition traps your body in a skin that feels like hard leather. It fuses your joints in awkward positions and your more sensitive to movement and touch. Clothing becomes your enemy and you have to choose clothing carefully. Every single one of these things that I've mentioned causes a great deal of pain and that's just a miniscule insight into the symptoms of scleroderma. Scleroderma symptoms once diagnosed are unique to that sufferer. No two people with the condition have the exact same symptoms. That's why I'm so passionate about doing awareness work. People need to understand that soft tissue is everywhere and it can impact your whole body, including internal organs. Battling with that on top of all the scleroderma symptoms is extremely tough. You'll have multiple symptoms happening to you at once and it seems never ending, which takes a toll mentally and physically.

What do you wish more people knew about the condition?

If you've got a broken arm, people get it because they can see it, but this is so much harder to explain to people. It's a chronic condition and it's very difficult to be battling every day, especially when no one knows what it is. It impacts you from the time you get up until the time you go to bed. Most people go to bed to rest, but that's where we deal with worse symptoms. I spend all night trying to find a comfortable position and it takes its toll. But I swear by bathing in magnesium flakes for twenty minutes before bed, because it helps relax the muscles and sends you to sleep.

If you are interested in helping SRUK to fund work that will help to improve the quality of life of our community, then please donate today. We rely on the generosity of the community to continue to support groundbreaking research in both scleroderma and Raynaud's.

If you would like information on scleroderma in different parts of your body, please visit: Scleroderma and your body

Information on physiotheraphy techniques for treating scleroderma can be found here: Physiotherapy: why, what, how?