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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.

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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.

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