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What It’s Really Like To Be A Woman Living With Chronic Illness

Art By Stephanie Deangelis

Living with a chronic illness is hard, at the best of times. Being a woman in this world is hard, at the best of times. Being a woman with a chronic illness is, therefore, obviously, quite a hard hand to have been dealt.

I developed my chronic illness at the age of eighteen, an autoimmune disease called Psoriasis that’s mostly known for its scaly flakes but is a lot more than just itchy skin. Recent studies have discovered that autoimmune conditions are rising by 9% each year. This report has found that type 1 diabetes, rheumatoid arthritis and multiple sclerosis are currently costing the NHS more than £13 billion a year and that a massive four million people in the UK are known to be living with at least one autoimmune condition. And that’s just the autoimmune category.

For me, chronic illness has completely altered the way I live my life. Any care-free attitude has been stripped away from me, the idea of moving abroad now seems impossible and life, in general, is just a lot more difficult. From the physical symptoms to the mental and consequential – it has seeped into every part of my life and coated it in a thick tar of inconvenience. That word might not sound dramatic enough, but on the day-to-day, that’s what I’ve found life with a chronic illness to be. Inconvenient. Of course, it’s painful, isolating and discouraging. But mostly it’s just really fucking annoying. It’s annoying having to cancel plans to make room for feeling sick after taking my medication, it’s annoying having to explain to new partners that dating me will come with a chronic illness, it’s annoying having to worry about things “normal” women in their twenties don’t have to, it’s annoying having to go to the hospital every month, it’s annoying having prescriptions as long as your forearm. It’s annoying.

As my illness affects the most visible organ (skin), I’ve had a fair number of sexist side-effects: from men telling me they’d find me more attractive without it, to the media zooming in on celebs with the same condition calling it “unsightly”, to the beauty industry having next-to-no representation of women who don’t have clear skin. Then there are the specific issues that aren’t surface level, like that fact all the drug options I’ve been offered affect female fertility in some way. Or that women in the UK are paid 18.4% less than men but have to pay the same amount for medicine.

It will feel like you’re completely alone in this. But I promise someone will have shared your experiences. Someone will be in the thick of it, too. I spoke to a handful of incredible women who are balancing the trials of surviving as a woman in this patriarchal society and struggling with chronic illness, this is what they had to say…

 

Cybaniak, 44, living with endometriosis

“It governs my whole life, really. The symptoms can begin during ovulation and last throughout the entire cycle, including my period. It’s exhausting! Even with an extremely supportive husband at home I feel like the world has to stand still when I’m down – the guilt I feel for not being able to make the kid’s lunches, make dinner, tidy the house, do laundry…all of it makes me feel like I’m putting so much pressure on my husband. He’s quite capable and willing to pick up the slack, but it still feels like I’m not doing my ‘job’.”

Katie Silverthorne, 37, living with MS

“I was diagnosed at the age of 23, so I’ve had relapsing/remitting MS almost my whole adult life. When you live with a chronic illness you learn to make adjustments to what you can and can’t do. It’s about being real with yourself and listening to your body at all times. If I fail to take note of the warning signs – like a tingling in my foot or a pain in my side – then symptoms can progress rapidly. They can be seriously debilitating and may not go away.

I haven’t let MS stop me, though. I have travelled extensively, raised a family and I run my own business. I feel that I have to succeed not in spite of the MS but because of it. I’m driven to make the most of my life at every turn and refuse to give up. I stay healthy and fit by making sure I eat properly, exercise when I can, keep a positive mental attitude, get acupuncture and by never drinking alcohol. I can’t predict how the illness will develop in the future, but I have kept it back by following those rules. They work for me. I think most people have a cross to bear in their lives and we just have to find a way to work with it.”

Delia, 28, living with endometriosis

“I had a ruptured endometrioma, which I suffered with for months until it burst in March 2018. I went to the GP multiple times and kept getting dismissed for IBS or for a travel bug; there’s a massive lack of education on endometriosis and women’s issues in the medical community, clearly. It made me feel like I was almost going a bit crazy, wondering whether it was just in my head. I had to focus, put on a straight face, pull through meetings and try my best to act normal when I was in so much pain.

Women are expected to go on with everyday life as if nothing is wrong – have children, have a career etc. When you’re sick because of a period, you get the feeling people are pointing fingers at you because most women get periods and it’s ‘normal’ so “why make a big deal out of it”. But for some, it can feel like hell on earth for a few days.

Aside from the fact endo can only affect (cis) women and not (cis) men, having a chronic illness that people cannot see is hard. For example, you don’t get a seat on the train because you don’t have a broken leg or pregnancy badge, yet you may be in so much pain that a seat would really, really make a difference. Others are very quick to judge, and that’s how this can very quickly turn into a mental health issue as there’s such a pressure to fit in and pretend everything is OK when it may not be.”

 

Writing this, I’m faced with an innate stoicism; to not complain, to not make this narrative feel “woe is me”, to just get on with it. But, I’m catching myself out, because it’s okay to admit to not being okay and being the victim of something. Women are constantly made to feel that showing any signs of weakness is a bad thing and that you won’t be respected by men if you show vulnerability; and to that, I say fuck off. It shows much more character and strength to talk about illness and ask for help than to bury it – anyone who thinks otherwise is not someone you need in your life.

Ask for help, by reaching out to these amazing Charites:
Pain UK 
CDRF
BEN
CHUFFED

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