What I Wish I’d Known About AS

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Ankylosing spondylitis for me initially was horrible, horrible pain. And I couldn't sleep in bed, I would have to sleep sitting up on our couch. I was really scared that I may never be able to have a family. My life felt completely out of control. I didn't have the tools or knowledge of how I could improve my symptoms.

One thing I really wish that I would have understood about living with ankylosing spondylitis is that I didn't have to be so afraid. I had a doctor who said I could end up in a wheelchair by the time I was 40. There were all of these unknowns and things, and that just set the cycle of chronic fear for me. I wasn't able to think critically. I was hardly able to function.

Something I really learned through my entire journey is that our mind and our bodies are very much connected. So all of the time I was stressing and fearful about ankylosing spondylitis and my future, I was having these repetitive thoughts. And every time I would have this thought, my physical body would have a stress response. And that stress response once in a while is OK. But when we're living in a chronic state of stress, that is not beneficial to our health.

I think the place that really helped me was just acknowledging that fear and I accepted it. I think I also realized that I needed to focus on the things that I could control. Some of the things I do every single day, I call them my non-negotiables, is I nourish my body in some way. And for me, nutrition and food I truly do believe is medicine. And I always make sure that I have a smoothie every single day. And for my body, exercise is really important for me. And when you live with ankylosing spondylitis, even if you are in remission, you still need to make sure that you are moving your body. And then I always nurture my spirit as well. So prayer is a really big part of my life as well as gratitude.

When my body couldn't do what it can do now, I was always mad at it. And so over time, the more I showed it love, the more it responded. When you are dealing with something like ankylosing spondylitis, it can really wreak havoc on your mental health. So one of my greatest learnings when it comes to protecting my mental health is support groups. But I think you have to be really cautious about the ones that you join and make sure that you're finding a group of people that really resonate with you. Because what I found is a lot of support groups just brought me down. Because they were a really negative stressful place. And finding a group of people that you can get mutual support from in a positive way can be really helpful.

Back when I started having my initial symptoms, I was searching everywhere. And I just couldn't find anyone's story about a good outcome from ankylosing spondylitis. And I really couldn't find any information at all. And so that is what inspired me to start my blog, Whole Lovely Life.

Sharing a story can be a really scary thing. It takes bravery sometimes. But I have found it to be so incredibly healing for myself that I want to share my story as much as I can. When you're first diagnosed with a chronic illness, it's really hard to see what the future holds for you. But I really wish that I could have just told myself just have trust and have faith because my diagnosis has led to this massive journey.

And I've been able to fulfill at this point, all of the things that I have ever wanted to do. I've been able to have a family I recently left a full-time job to pursue coaching and helping other people who are suffering with autoimmune disease. I think the greatest gift we can give another person who's struggling is hope and our stories really give people hope. And as these 15 years have gone by my hope gets stronger every single day. [MUSIC PLAYING]