Unhelpful Weight Advice and Ankylosing Spondylitis

Trying to live a normal life with ankylosing spondylitis is a struggle for many of us. The pain and the lack of movement is such a huge part of this condition, as well as struggling with weight. I have struggled with this for many years and I wish to share my story.

My early years

In my teens my life changed a lot due to AS. Fighting the constant pain and giving it my all at school to still be able to work for a future that I wished. Being in constant pain made it difficult to exercise. But that is exactly what my doctor said. You should exercise more and try to lose some weight. Of course I know the doctor was right when he said that carrying less weight around would give some relief to my spine. But as many of us have experienced, it's easier said than done. Fighting through the pain was so horrible for me. And when you experience that kind of pain it’s easier to just skip exercise and just sit and relax.

The mental struggle

Having a disease like AS took a huge toll on my mental health. The pain and the fatigue that I experienced caused me to stop fighting for my own life. I’ve been at the point where I thought, “What’s the use anymore?” My journey would have looked different if my doctor would have done more than just say, “You should lose some weight.” I would have liked to have received more support during this time. And not just to push me, but to be taken by the hand. A professional who would have the knowledge of the struggle that I have experienced on a daily basis.

The yo-yo effect

Throughout my journey I haven’t been overweight all the time. I’ve had two periods when my disease was so active that I could eat what I wanted without gaining weight. The disease took all of my energy. But when the flares were a bit less active I would gain weight again. Still experiencing too much pain to exercise. With just enough energy to cope with my normal work life. And being back at square one. With my doctor telling me that losing some weight would be beneficial for me.

I’m not pointing fingers

Though I would have loved to receive some more support during this period I’m not blaming anyone. Family and friends “with all the love in the world” couldn’t conceive of what I was going through. I guess I see it more as a flaw in the system. Or a point that should get more attention. Being chronically ill is so much more than just experiencing pain. It’s a struggle for us on all fronts.

The period after I received two hip replacements the professionals were quick to say, “If you can walk a little again, you can work a little again.” Not taking into consideration that chronic illness, surgery, and recovery took on my mental health. And in such a period where I was struggling again I would feel helpless again and gain weight again. We all have experienced these problems. Now it’s time to get it acknowledged.