Elysa Manning's Story

What were the steps leading up to your diagnosis?

It took me an incredibly long time to be diagnosed. As a child I would get the butterfly rash on my face when exposed to the sun. I was extremely lethargic and the skin from my feet and lips would often peel. I was misdiagnosed several times when I was younger, with my symptoms often being put down to hormones.

When I was 19 a mark appeared on my face, which progressively got larger, darker and angrier. It would scab, peel, flake and bleed. Three separate GPs over the course of two and a half years told me that it was a spot and would fade. Obviously, it was not and it did not. I eventually got a breakthrough when I simply refused to leave my GPs office without a referral to a specialist. Almost immediately my consultant scheduled a biopsy and I was diagnosed.

What lifestyle changes have you needed to make?

So far, the biggest lifestyle change I have made is learning to say no to people when my illness is too much for me. Previously I just thought that everybody felt this rubbish all the time, and I felt guilty if I couldn't perform a task to the best of my ability when asked to. Learning to say no has allowed me to better understand that some days I have limitations on what I can do, to accept those limitations but also find my strengths.

While I always tried to maintain a healthy diet anyway, my diagnosis has prompted me to really push for a healthy lifestyle – even if some days I am too tired to go for a long walk, I am active every day.

Who has been there for you? How?

My family have all been very supportive, and the charity Lupus UK has been great – they have sent me countless books and other materials to support me. A friend of mine has signed up to run two half marathons in order to raise money and awareness for Lupus UK.

My biggest supporter is my partner, Rob – he even held my hand while I had my biopsy! Rob has taken everything in his stride, he helps with all my medication (I'm a bit useless at remembering to take so many tablets!), he deals with my horrendous moods, and most importantly he just gives me a cuddle when I really need one. Rob is a prolific internet searcher as well, and often finds research and studies into diet and lifestyle in order to try and help me at home. Rob has also signed up to a number of events to raise money and awareness.

What accomplishment are you proud of?

While I was at university my undiagnosed lupus really affected me. I was overwhelmingly depressed to the point where I would not leave my room, and was often only eating when friends or Rob brought food to me. This obviously affected the academic side of my university life, too, and after two years I left. I spent a year at home, working full time but feeling just as terrible, still with no diagnosis or help from my GPs. Finally, after my diagnosis and all the help I received from my consultant, I regained my confidence and within 3 months had become a trainee accountant. I'm really proud of myself for taking the first steps to getting back into education and building a career, as the depression that came with my lupus had previously been so debilitating.

What's your advice to someone else living with Lupus?

My advice would be to always remember that you are LIVING WITH lupus. It does not define you and it is not all that you are. There will be times when others do not understand that you feel consumed by your lupus, because you do not look sick. This might even make you feel as if you should just "get on with it". Never let another person take away your right to be frustrated and upset; it's okay to feel rubbish some days, and it is okay to say no.

Is there anything else we should know?

I am 22 and live in Harrogate, North Yorkshire. I am half Burmese, on my father’s side, and have rather a large family. I am training to be an accountant and absolutely love my pets – Tiber the Labrador, Minky the cat and Tato the hamster. My boyfriend and I have been together for nearly three years and are hoping to travel through South East Asia and Australia one day – soon hopefully!