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Living with Lupus

Hillary Mensah

8 November 2017

16 months after my diagnosis, I am still coming to terms with what it means to live with Lupus.

Lupus (Systemic Lupus Erythematosus) is an autoimmune disease where the body’s white blood cells attack the healthy tissues, resulting in inflammation to the joints, skin and internal organs. It is a life-long condition, there is no cure and little understanding as to what causes it. I was 18 years old when I had my first flare up and was diagnosed. Before then, I had never heard of the condition, didn’t understand how I got it or the implications it would have on me for the rest of my life.

Symptoms include but are not limited to; chronic fatigue, skin rashes, joint stiffness, chest pains, headaches, swelling, hair loss and weight gain. In short it can knock you sideways, but, similar to other conditions like MS, it is often invisible to others. You can go months without having a flare up or experiencing any symptoms. This makes it hard to explain the condition and its impact to friends and family. Even when it does flare up, symptoms like chronic fatigue and joint stiffness are often seen as being lazy or mistaken for other conditions. It’s difficult to explain the effect that Lupus can have on your everyday life.

Under the government’s definition of disability, those diagnosed with long-term health conditions such as Lupus, are regarded as being disabled. This is something I really struggled to come to terms with. Being someone that is a fully abled person, recovered from my flare up, just started my first year at University. It’s hard to consider myself as a disabled person. When I finally gained the courage to tell people, a lot of the responses were “but you don’t look disabled, you look fine to me, you don’t look like you’re struggling”.

What does it mean to be disabled? Just because I am not in a wheelchair, using crutches or a stick, doesn’t mean that I don’t have a disability. Invisible conditions such as Lupus make it very hard for people to understand. It is very difficult to openly talk about it and find the support that you need. When I was diagnosed I didn’t know anyone with the condition, I couldn’t talk to friends or family because they didn’t know anyone, nor could they understand it. I came to terms with my condition on my own. It shouldn’t be like this, as a society we need to bring invisible conditions out into the open. Suffers feel afraid of speaking up at work, school, home etc, for fear of being judged or treated differently.

The conversation around Lupus needs to be increased so those with the condition can feel comfortable and able to share their circumstances with whoever they want. In the months following my flare-up, I suffered from anxiety and depression but lacked the opportunity to express my thoughts. I am not the only person in the UK with Lupus yet that is exactly how I feel every day and it is becoming increasingly frustrating.

Having Lupus is still something I find very difficult to speak about, not knowing anyone else with the condition means I have no one to talk to. The experience I went through last year still traumatises me. Unable to plan for the future because I could experience a flare up at any moment, the possibility of it affecting my ability to have a family, relying on half a dozen pills to get me through each day, regular blood tests and doctors’ appointments and more.

At the age of 19, I am still coming to terms to what it means to have a condition like Lupus. I’m not alone – there are many thousands of people living with invisible conditions who struggle to get by, made worse by our lack of awareness and understanding as a society that someone can be disabled without it being obvious. We are making headway with specific initiatives to increase understanding and acceptance around conditions like autism and dementia, but there’s a long way to go. The rapid rise in prominence and priority of diversity and inclusion as a key aspect of many organisations is a welcome sign, and the big milestone will be when we don’t need visual proof of disability before treating all people with respect and care.


Photo credit: WOCinTech Chat