My Diagnosis Day

I remember my diagnosis day vaguely. I had met with my rheumatologist once already. I was not expecting to have another appointment for a few months. My day started with a call from my rheumatologist asking could I come to see him at 12 pm. I hung up the phone feeling terribly anxious. I knew this day was coming, it had been building. I knew something was wrong with me and today was the day I’d find out what.

My parents drove me to my appointment. I was a nervous wreck. I arrived in the waiting room, my mam came with me for moral support. In my previous appointment, I was told that I have to go into my appointment alone as I am over the age of eighteen and because of COVID-19.

My stomach dropped

The rheumatologist called my name and said I could bring my mam in with me. My stomach dropped, I knew that something had to be wrong, it was getting serious.

He began to speak to me. I was so worried that I couldn’t listen or process the words he was saying. I had never heard of ankylosing spondylitis before this day. I was in so much shock that I did not cry or ask questions.

After the appointment, I needed to get more x-rays done. Luckily, this was in the same building. I sat in the waiting room with my mam. My mother was also in shock, she was talking and comforting me but all I could think about was this big, long word that I couldn’t pronounce.

I felt relief and sadness

I then felt an overwhelming sense of relief and sadness, both at the same time. Finally, I had my answer. But what did this answer mean? I had no idea.

My mother was visibly upset but was trying to be supportive of me. I could see her glasses had fogged up and I could see the tears running down her face. Seeing her upset made me feel more upset, I told her to go back to the car and ring my family. I wanted to be alone. I’m not quite sure why. I didn’t want to deal with this, not while sitting on a cold plastic seat in an austere waiting room. I wanted to be in my home.

I cried the whole way home and the rest of the day. It didn’t stop there; I must have cried for a whole week.

I thought maybe there was a mistake

I kept thinking, I'm so young, why and how do I have this life-long condition? I began Googling my condition. This was a bad idea as I got a mix of responses. I kept thinking: maybe I don’t have this condition, maybe there has been a mistake.

There was no mistake. I have this condition for life. Thankfully, I have grown a lot since my diagnosis. I now accept my condition. I have learned how to live with it, I had no other choice. I was diagnosed less than a year ago and I am constantly learning new ways to manage my illness.

I would say being diagnosed with this condition is one of the most traumatic experiences of my life. I would consider myself a happy and bubbly person. Like everyone, I would get sad from time to time but I never experienced feelings like I did when I was newly diagnosed. I was so sad all the time. For months all I did was cry. I didn’t know what to do with myself. I thought I will be in this bed for the rest of my life. I was worried about the present and the future. I was angry at my body, frustrated with myself that I couldn’t do the things I used to do.

Feelings won't last forever

If you are recently diagnosed, all the feelings you are having right now are valid. But please remember, these feelings won't last forever. Remember; the only thing constant is change. Your life is not over. You can still do the things you want to. You might just have to adjust and change your approach.

I have my good and bad days. But as time goes on my treatment is working more and more. And the good days are more often. Like I said above, I thought that I would be stuck in this bed forever. Luckily, I am not. And luckily, you will get there too.