When I was diagnosed with ankylosing spondylitis five years ago, I was far from accepting it. All I wanted was to be ‘normal’. At first, I kept the diagnosis to myself as I struggled to come to terms with it, let alone admitting it out loud. I felt that people around me already don’t understand my pain and limitations. I believed they were unlikely to understand the diagnosis as well.
Even today when I am trying to raise awareness of AS on social media a post about my cat gets more interest than any of the information and AS facts I have been posting. Frankly, it does anger me, and I don’t want to be angry. Sometimes it just seems easier not to say anything.
When I experience ‘bad days’, I tend to keep it to myself as well. My parents are extremely supportive and understanding, I know how much they care about me, so sometimes it’s just easier not to give them extra worries.
I was able to hide my diagnosis very well in the beginning. The only difference for me was that I had a reason for the pain, nothing else. However, when I started taking certain medications such as steroids my appearance began to change. I started gaining weight, lost interest in my personal appearance, was spending most of my day in bed and haven’t been socialising at all. It was mainly due to pain, but I also think deep down there was a shame of losing to AS. There was a shame of putting on weight and not being able to do anything about it. I felt that everyone just assumed I was ‘fat and lazy’ since AS is invisible and they couldn’t know the real reasons.
Whenever I actually opened up to people their reactions were very mixed. Most of the time they just looked puzzled and asked “Anky..what!?” Some treated me like I had become a fragile china doll and was about to break. Others would either be like “Oh yeah I get joint pain sometimes” or “At least it’s not something like cancer.” I’m not sure if that was their attempt at empathy or if they just didn’t know what to say…
It’s hard to be a young woman and suddenly start putting on weight, especially if you’ve always been a healthy size. My self-esteem dropped to the all-time low. I didn’t feel like ‘me’ anymore.
The once sociable, bubbly, outgoing girl now wouldn’t go out for days. When I had to cancel on my friends, instead of telling the truth I would say “I’ve got a sickness bug” or “I’ve lost my voice”. I thought they wouldn’t understand. Only now I know that I got it all wrong…
When you’re young and newly diagnosed you need to be open with your friends, family and educators. Don’t learn the hard way like I did. Being open and honest to those that matter or are closest to you will allow them to learn and accept changes in you. Those who are truly there for you will support you fully and look through your condition.
Around the time of my diagnosis I started a university degree in Physiotherapy. Enrolling in a course that requires to complete six, six weeks long placements over the span of 3 years turned out to be a whole different ball game! I chose this course as I could no longer perform my labour-intensive job at the time (due to the amount of pain I was in) and I have always been interested in physiotherapy.
Two things I found the most difficult about my course was sitting for extended periods of time in lecture theatres and more than anything fatigue.
Fatigue from travelling up and down to London on public transport. Fatigue while trying to keep awake in lectures after a week of not sleeping due to pain. Fatigue when getting up at 5am to go on work placement. Fatigue from trying to juggle essays, placements, lectures and consultant appointments. It has always been a real factor for me. Even now I didn’t manage to get a handle on dealing with it properly. I’ve only just about learnt how to work with fatigue and that’s if I limit my social life to zero!
I loved studying physiotherapy. It gave me such a privileged opportunity to learn more about my condition, weaknesses and disabilities. More than anything it taught me how to deal with them. How to stay flexible and strengthen my body. How to gently exercise when flaring or to deal with the after-effects of a flare.
Due to my condition I’m able to be more empathetic with chronic pain patients. I can have in-depth conversations with rheumatology patients and recommend things that I know work first hand.
I also met my best friend who suffers from Lupus on that course. It was so nice to have someone I could relate to! We often joked about our symptoms and things that only someone who lives with a chronic condition can understand.
While working with patients and other physiotherapists I finally felt I’m wanted again. I felt I’m actually good at something and I started to think: “I can do this, I can be a good physio!” That was my turning point. I decided that AS is not going to define me.
I kick started myself into healthy eating and made sure I exercised as much as possible. I think it’s important to tailor your exercises to your personal needs and preferences. I hate walking, so I cycle and swim or ride my horse and do specific stretching and strengthening exercises.
Don’t get me wrong, it’s not going as ‘nice and easy’ as it may sound. I have been eating healthy and exercising for the past three years and have only managed to drop a stone. It can be discouraging, trust me, especially when even health care professionals are doubting you! It is so frustrating!
There are still things I’d like to do better, like striking good balance between exercising and resting, or losing more weight. I think everyone have those issues, right? The most importantly I’m beginning to learn to love myself again. I start to see things out there in the world that are worth living for.
I live my life with a mind set: Yeah, I may be ‘crooked’ compared to my friends and I spend most of my free time in bed, but that is the new me and I’m ok to give myself a break. I may be mourning who I used to be, but I can also embrace who I am now!
I’m more accepting of AS. I’ve learnt to forgive myself more and accept my short comings.
I am not the same ‘me’ that I was five years ago. I feel stronger within myself than I have ever before. I’m more open about my AS and always trying to teach others about this condition and raise awareness. There’s a quote I saw recently which really sums up my attitude: “You either live to survive or you live to strive” and I certainly aim to do the latter!