A Little Bit About Me and My AS

Throughout my life I have always been tired, I thought this was "normal." I have suffered from mild back pain on and off for years, mostly in my tailbone. I always put this down to a car crash I was in a few years back. But I was wrong.

Growing up I would get sick very easily, always having a cold, the flu, chest infections, etc. I was sick more often than my friends. I used to faint quite frequently, I thought that this was just me. My immune system was weak and I just did not know that yet.

Then it got a lot worse

Last year the pain became debilitating. I became bed bound for approximately three months due to extreme pain and fatigue. I went to my local medical center and met with several doctors. They all proceeded to tell me that “I’m too young to be experiencing the pain I was describing,” “maybe try yoga,” “maybe it’s stress or maybe it's all in your head?” Of course, hearing all these comments from professionals was disheartening and confusing.

I started seeing a physiotherapist. She realized after only a few sessions that something was not right. Each session she would begin with: “I'm guessing you're feeling a lot better now." Unfortunately, the answer was always no. Each time she examined my back she grew increasingly concerned. Therefore, this was not an injury that was causing me pain. I was getting worse, not better. The physio could not help me. She advised me to get a blood test.

Getting diagnosed

I returned to the doctor for my blood test. I felt scared and embarrassed, as these were the doctors who were not taking me seriously. Signs of an autoimmune disease had shown up in my blood. A referral was sent to a rheumatologist. He then diagnosed me with ankylosing spondylitis. Initially, this diagnosis resulted in me feeling distraught. But strangely, a huge sense of relief came with this diagnosis. I was incredibly lucky to get my diagnosis within a year as this is not always the case. This is when things changed for me. Finally I was heard, finally someone believed me. Now I had a starting point to manage this.

Dealing with my diagnosis

It took a few days, even weeks for this to really kick in. That I had a lifelong illness that I had to deal with. I felt so alone, I knew nothing about this condition. Every day I would cry. But as time went on, I went from crying every day to crying once a week, to once or twice a month, to rarely crying.

Fortunately, now the days I cry are few and far between. It shows that time really does heal your wounds. Each time I cry now I think wow, I have not cried in a month. Crying and being upset is a part of the healing process, allow yourself to do this. This shows me how I am better coping with my chronic illness, mentally. I started to view the challenges of life as a chance to grow stronger. Of course, I had to think like this. I wasn’t given a choice.

Medication

Unfortunately, as you know, there is no cure but there is treatment that will help me live with this condition. There is a lot of trial and error with getting the right meds for you. But you will get there. This can be disheartening and disappointing at times, but you will get there. I began taking various types of non-steroidal anti-inflammatories first and then steroids. With both types of medication, there were significant side effects. However, there was also very little reduction in pain and other symptoms.

I started taking biologic injections in July 2020; Being told that I will have to inject myself for the rest of my life was a terrifying thing for me to hear. I HATE needles. Durning nearly every injection or blood test I would faint. People would tell me that I would get used to the injections and the illness. But I did not believe them.

I was wrong.