My Mystery Skin Issues

Sometimes I think my immune system thinks it’s a Pokemon trainer – when it comes to health conditions it feels like it’s gotta catch ‘em all!

Until recently, the only confirmed conditions in my medical Pokedex were ankylosing spondylitis and rheumatoid arthritis. But my body decided that this was not enough and it needed to add a couple of things to the collection. Unfortunately, these new additions remain a mystery to me and here is why.

Body rashes

A few months ago I started noticing rashes forming on my arms, legs and chest. I found this so frustrating as healthy skin was one of my few good attributes! I took some comfort in the fact that they were all located in areas I could cover with clothing, but I knew that the issue needed to be addressed.

I saw a dermatologist who decided that a biopsy would be the best way to find out what was going on. I came back a few days later to have a chunk of my arm chopped off.

When I returned for my results, I was warned that the doctor may see me a little later than planned – something that I think we have all come to expect every time we enter a hospital. But I did not expect that delay to be just short of 4 hours. I was already exhausted from my 2 hour journey here but now I was a complete zombie. Fatigue and brain fog had completely overwhelmed me.

I couldn’t focus

When I finally made it into the doctor’s office, everything she said went completely over my head. She revealed that I had a specific type of psoriasis, but the name had way too many syllables for my foggy mind to remember. It was also a massive struggle to comprehend the explanation of how and when I should use the 4 new creams I was being prescribed for it.

It must have been obvious that not much of this was registering as she told me that it would all be cleared up in the letter that she would be sending out in a couple days.

I got the impression that I was getting rushed out the door after this, but I was so knackered by this point I was happy to get it over with. So, I collected my goodie bag from the pharmacy and embarked on my long trip home.

Unfortunately, the letter never arrived, and neither my GP nor my rheumatologist were able to find any record of my new diagnosis or the instructions for the treatment on my record. To this day I have no idea what my new skin issue is or how to use my stacked new collection of skin ointments.

A face full of blisters

Fast forward a few months, I found myself waking in hot and cold sweats. I stumbled to the bathroom to wash my clammy face and looked into the mirror and saw the human version of a peperoni pizza looking back at me.

My face was covered with dark red blisters and as I gasped at the sight of my own face, I realised that my mouth was filled with ulcers too. I knew that this was not the same issue as before as the spots looked nothing alike and were extremely painful. The mystery psoriasis that I experienced previously was at least polite enough not to cause me pain or even give me as much as an itch!

The accompanying fever soon became unbearable, and my joints soon joined the pain party by starting to flare too. It was time that I wobbled down to the emergency room. I was seen immediately, which was a relief but also a little concerning as I realised that the horrifying sight of me meant that the doctors figured that I needed urgent attention.

None of the doctors on shift had any idea what was going on. So, they swabbed my face dry, took what felt like half of my body’s blood supply and asked me to stay overnight so that I could see some more specialised doctors in the morning.

But I hadn’t eaten anything all day and the hospital didn’t have anything vegetarian or soft enough for my damaged mouth to eat. So, I went home for a disappointing soup and a snooze before returning first thing in the morning.

In the morning

I saw two different doctors who both questioned me about my ethnicity and whether I had Turkish ancestry – which as far as I am aware I do not. My olive skin and thick beard has always made me look pretty ethnically ambiguous and I am no stranger to being asked "where are you really from?" questions on my trips to pubs, but it was a bit weird hearing it from a doctor.

It made more sense when a third doctor came down to explain that they had narrowed down the cause of my terrifying face to two options. I either had a very nasty viral infection or it could be Behçet's disease – a rare chronic condition that is more prevalent in people of Turkish or Middle Eastern descent. They wouldn’t know for sure until my swabs had come back from the lab which would take a week.

It was closer to 3 weeks later when my phone did finally ring. By this point thankfully the rash had cleared and I was back at work. But it meant that when they did call me I was riding the tube underground and did not have phone reception to receive the call. They left a message saying that the swab never arrived at the lab and hoped that I had made a recovery before signing it off by saying; "That’s it from us – good luck!"

It’s probably a good job that I did not have signal when they called because I would have probably disturbed the whole train carriage screaming down the phone at them for their incompetency and having the cheek to try and medically break up with me with such a lame final line.

Moving forward

Annoyingly, the hospital I visited is so badly organized that there is no way to directly contact the doctors that saw me, or even leave a message for them to call me back. So I am going to have to chase this issue up in person. My other option is to play the waiting game and see if it ever happens again. But I am not sure I want to live with the anxiety of waiting for something bad to happen.

I’ve been trying to get in contact with the dermatologist regarding the first issue too, but I have been told I need to wait until my next check up before I can speak to them directly.

It seems that those of us with chronic illnesses have to spend way too much time chasing up doctors. Unfortunately, it has become a necessary part of staying on top of the never-ending battle with our immune systems.

To avoid any of this happening again, I am definitely going to be taking notes in my future appointments and find a more competent hospital that doesn’t lose a pencil case full of swabs in its lab!

Have you ever had any similar experiences? Let me know in the comments below.

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

Have you taken our In America Survey yet?