Just because you can’t see it, doesn’t mean it’s not real!

By Jessica Walford

Hi, my name is Jessica. I'm 33 years young, originally from the UK but now living in beautiful Aotearoa with my amazing husband David and our absolute miracle of a daughter, Miss Hendrix Rose. So far, life sounds pretty 'normal', right? 

Well… I have a hidden secret: I live with an invisible illness.

Imagine you're in your late teens, you wake up and can barely move, barely get out of bed, and can barely take a step forward without wincing in excruciating pain, you feel like you've aged overnight, aged for no apparent reason. 

That was me; at the age of 19, that became my reality. I woke up one day and was in so much agony, in my back, hips, thighs, legs and feet. It just radiated everywhere. All of a sudden, I had no energy; life was zapped entirely out of me.

When I was 24, I was diagnosed with a condition called Ankylosing Spondylitis….. "Anky-what? Were my exact thoughts when I got the diagnosis. How am I going to navigate an illness I don't even know how to pronounce? AS (ankylosing spondylitis) is a progressive disease. A form of inflammatory arthritis and is unfortunately not widely understood. However, they believe it to be an autoimmune condition, where the immune system attacks the body, attacking the joints in the case of AS. It usually starts in the late teens to early adulthood, causing pain in the lower back, which happened to me. 

AS has a very long road to being diagnosed and can take up to 8 years to get a diagnosis and receive the right treatment. Eight long years, can you believe it?! In my case, I was very lucky, and it took almost half of that! I'm not sure how I would have coped if it had taken any longer! I finally had my diagnosis of Ankylosing spondylitis.

The road to being diagnosed was tiring; it was depressing, it was incredibly lonely. I mean, I was 19 when the onset of AS started, my friends were all off having fun, and I was isolated at home feeling sorry for myself, sorry for not being unable to join in with a lot of the things they were doing. The trouble with getting the correct diagnosis is that having back or joint pain at a young age is usually put down to an injury or the likes, so you get sent on your way, told that it will likely heal over time, but that never happens. I really had to advocate for myself, but to be honest, I started to think that maybe it was all a figment of my imagination. 

I was called lazy many times because, at the time, work wasn't my priority. I lost friends because they were blind to it, but just because you can't see something, it doesn't mean it doesn't exist. 

If you were to put me in a lineup right now with 1000 other people, you wouldn't be able to point to me and say I am one of the ones with AS..nor the other 12 that are likely to have it. On the surface, I don't look as though I have a progressive disease; I look just like the average person.

Coming to terms with the fact that I have an invisible illness was extremely tough; where was my life heading with this diagnosis? How was my life going to change? At first, it changed drastically; my life went into early adulthood feeling like I was 90, not 19. I was on morphine, had cortisol injections, and took anti-inflammatories for the pain. I even had to have many modifications in and around my home. I needed things like a bed lever, a bath lift, a toilet frame. Honestly, not what I was expecting for my life at such a young age, and for me, it really did feel demoralising. 

Days out for me soon became group gym therapy sessions with others that had AS even that felt lonely because I was the only female there. I started hydrotherapy sessions, one on one sessions with a physiotherapist. All these appointments were exhausting. Not only was I physically suffering and exhausted, but it impacted heavily on my mental health too. I began comfort eating, gaining weight. I felt suicidal. It really did become a vicious cycle. The more weight I gained, the more pain I was in, the more pain I was in, the more I comfort ate, the more I comfort ate, the more unable I was, which led me to feel more depressed. One day, painfully and embarrassingly so, I couldn't get up off the toilet. I was so ashamed, but my then-boyfriend (now husband) had to help lift me up off of the toilet. Oh.. was I mortified! This embarrassing moment gave me an epiphany, making me want to better my life. From that moment in time, I really started to take my diagnosis seriously and stop the pity party. I started doing my daily prescribed exercises, taking anti-inflammatory tablets daily like I was supposed to. I also knew all the weight I had gained wasn't helping my AS, so I started eating better too.

I decided to take back my life.

Things became easier for me, and I was able to start doing more things again. I was learning to manage the condition and not have the condition manage me. Slowly all the aids I needed to help me navigate home life were able to be removed; AS wasn't going to keep me a prisoner anymore.

I've now done many things I never thought I'd be able to do living with ankylosing spondylitis.

And with that, I started living. 

• Awesome Humans