As I mentioned I didn’t really know what Lupus was, I just knew it was related to the immune system in some way.
Generally, I am fit and healthy and it was rare for me to have an issue requiring medical attention. However, in early 2017 I started to feel a bit “under the weather” and wasn’t 100% myself. I was in and out of the doctors initially with a fever and then with back to back chest and ear infections. I vividly remember saying “something is wrong with my immune system.” Little did I know, I wasn’t too far from the truth; and this was 10 months before finding out what was really going on.
Fast forward to summer 2017, what I had thought was just a regular spot on my cheek turned into some kind of abrasion. I can only describe it as a cut that appeared from nowhere and that’s when I knew something wasn’t quite right. Although I was given some creams which eventually sorted it out, I asked my doctor to refer me to a dermatologist as what was happening was very unusual. He explained that it’s unlikely for my referral to be accepted as the dermatology department were under pressure at the time and only wanted to take on more severe cases.
I had a few weeks when things were absolutely fine. I then went on holiday which involved a lot of sun exposure, specifically in the form of sunbathing! Two days after returning home I had an ear infection, and days after that what I now know as papules, (skin lesions/changes to specific areas of the skin) appeared across my chest. I went straight back to my GP and asked to be referred to the dermatology department again, luckily I was accepted. But I wasn’t going to be seen by a dermatologist for a while due to long waiting lists. Meanwhile, I was trying many different creams and was still unaware with what was going on with my body.
By the time it got to September I was back at university to complete my final year. That cut on my face which appeared out of the blue returned, and at the same time these papules also started to appear on my face. I was having numerous blood tests and in January 2018 I finally saw a dermatologist. My first appointment was on the Wednesday, the following Monday I had the biopsy and two days later I sat my forensic psychology exam with stitches in my chest. It was an interesting time to say the least.
A month later, we gained more clarity on the situation and the most probable diagnosis was Lupus. I remember my heart dropping a little when the doctor mentioned it (as I still didn’t know what it was at the time.) Here’s a little excerpt from my diary entry of that day:
“The culture came back negative, so we can rule out an infection. The histology however showed that my skin cells are inflamed and that it is likely that I have an autoimmune disease called Lupus. Although the results aren’t wholly conclusive this is the most probable diagnosis, yet the symptoms I’m showing doesn’t fit neatly into the Lupus types, but I do show similarities with Lupus Timidus. He asked about me being outside and of course I’m outside all of the time due to training. He asked if I use sun block and I said well only when I’m abroad, he asked about whether my skin is exposed when I’m outside training and I said yes, just not in the winter. Basically the sun is a definite trigger for this skin disease and I have to be very careful not to unnecessarily expose myself to the sun and use prescription SPF-50 every day, every hour. I also have to wear a hat to reduce the UV hitting my skin. The doctor didn’t seem to think that I had systemic lupus which would affect my internal organs (thank God). However it did bring me to think of last year when I was ill with so many infections and fevers! And I kept saying that I feel like my immune system is suppressed! Little did I know I’d know be diagnosed with an autoimmune disease. Since last seeing the doctor I have developed three more things on my face and he believes this could have been due to the sun exposure. He is further querying my case tomorrow with other consultants and would like further blood tests and a possible scan of my kidneys as he isn’t too sure of my high creatinine and whether that is associated. I feel fine in my body though, training has been going well and I’m not overly concerned right now. I don’t know if I’ve processed it deeply yet but I’m competing this weekend so I don’t want to fill my head with all these ‘what ifs’ I’m just going to listen to what I’ve been told and take the necessary steps to help myself.”
The meeting with the other consultants confirmed that it was Lupus and through some trial and error we have found out how to manage it. I take medication daily which prevents the flare ups and use steroid creams when they occur. I have a specific cream for my chest, a less potent one for my face/ears and another cream which I can use on all of the flares. The best thing I can do for myself is to be sensible, and avoid unnecessary sun exposure. With that said, I haven’t been as vigilant as I should’ve been since the diagnosis. For example, I went to Cuba to celebrate graduating from university and coming back from that holiday caused me to have the most significant flare ups I’ve ever experienced. As I write this I’m even dealing with a couple of flares in and behind my right ear.
What I have learnt, is that sun cream isn’t only restricted to holidays, or sunny summer months. It is the UV light which can be really harmful and that is what you need to be protected from.
So if there is anything you can take away, is that everyone should be using sunscreen on a regular basis regardless of having a skin condition or not.
I hope this post has given you a little insight into how I learned that I had Lupus.
If you have any questions please feel free to message me!