Ultimately, I wanted to get better. Having the aim of wanting to live my life to the fullest and do all the things I want to, was always in the back of my mind and it helped me remain positive although it was not always easy.

I was first diagnosed with discoid lupus (a form of lupus only affecting the skin). It took quite a while to get this diagnosis as I got referred to the dermatology department at the hospital after having a bunch of tests done at my GP, followed by a biopsy and lots of other procedures. Prior to all this, I had been informed that I either had a tropical infection from being abroad or it was most likely lupus, so I was kind of aware that it may be lupus. And as my mum started doing a lot of research into the condition, all of my symptoms most closely matched those of lupus.

After about 2 months I was finally diagnosed with discoid lupus. It was a relief to know that what I had, had a name. I started to experience a number of symptoms internally as well as my rash and hair loss, which led my mum and I to figure out that I also had systemic lupus erythematosus. Again, getting an appointment slot with the rheumatology department who deal with this took a while so we went to a private hospital in London to get some clarification of what was going on in my body. It turned out to be a lot worse than we had imagined… If I’m honest, during this whole process of getting really ill I was too tired to even take an interest in lupus, and it was my mum, dad and boyfriend who researched most of it.

It’s as if I didn’t want to face it in addition to the pain, fatigue and bad mood I was experiencing. It was a relief to know what I had but also scary to know that I was going to have it for life. I kind of just felt hopeless and forgot what it felt like to just be normal you could say, as well as how to be energetic and happy.

I felt angry at what I was feeling as well as angry at everyone around me because I felt that no one understood at all what I was feeling and experiencing every day and night. My rash had cleared due to medicine so it’s as if everyone assumed I was better but I was, in fact, getting worse. I knew that being ill and like this wasn’t going to be the rest of my life and I wanted to get better. I’ve always been quite a positive person and after doing some reading into it I knew that in order to change I had to make some changes. I made changes myself which were very hard most of the

I knew that being ill and being like this wasn’t going to be the rest of my life, and I wanted to get better. I’ve always been quite a positive person and after doing some reading into the condition I had, I knew that in order to change I had to make some changes. I made changes myself, which were very hard most of the time; for example my diet. What frustrated but also motivated me the most was the lack of medical help and information I had received prior to my hospital admission. Additionally, although I am on medication I had and still have the aim of trying to control my lupus through my diet and not medication, as I have read so many success stories about how people have controlled their lupus this way.

What frustrated but also motivated me the most was the lack of medical help and information I had received prior to my hospital admission. Additionally, although I am on medication I had and still have the aim of trying to control my lupus through my diet and not medication, as I have read so many success stories about how people have controlled their lupus this way.

Ultimately, I wanted to get better. Having the aim of wanting to live my life to the fullest and do all the things I want to, was always in the back of my mind and it helped me remain positive although it was not always easy.

What really helped me was keeping a diary throughout all of this. Not only did it keep my doctors informed, it allowed me to keep a record of all the symptoms I had, especially as I constantly kept experiencing so many different things.

Today, although I am continuing my journey with this condition, I decided to create a page for individuals like myself who are going through the same situation. I wanted to share my own experiences and pieces of advice, with the hope of providing others with valuable information which can help them in the absence of some solid medical answers.

– S.B.

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