Waking Up In Pain
“I first knew something wasn’t right when I woke up one morning in February of 2017. The right side of my hip was hurting a lot, but I didn’t know why. I had gone to bed fine the night before, only to wake up to excruciating pain in my hip. I figured I had hurt myself working out, and that I would walk it off throughout the day.
I went to work at a local restaurant, where I was on my feet all day. The pain wasn’t getting better, and as I worked for the next 2 weeks, I knew something was seriously wrong.
I had just turned 21 a few weeks before I woke up in pain. I was a pretty normal 21-year-old, although I had gotten sick quite a lot throughout my childhood and teen years. I also lived with depression and anxiety for a long time, but besides that, I was completely healthy. I had no idea of what was coming.
Waiting For Answers
Before I knew it, I was unable to work due to the pain I was in. I went to see my family doctor, who could tell something was seriously wrong, and she gave me notes to stay off work and in bed. I was sent for MRIs, X-rays, and bloodwork. Everything was coming back normal.
I was confused, upset, frustrated, and angry. I was in so much pain that over the course of a month I was bedridden. Apart from doctor’s appointments, my life was spent in bed. From March to May 2017, that was my life.
I was referred to a neurologist and a rheumatologist — the only issue being in Canada, specialist appointments take months, even years, to get.
I saw a neurologist rather quickly, but he took a look at my MRIs and knew it had nothing to do with neurology. I would have to wait 6 months to see the rheumatologist.
In the meantime, I was doing physiotherapy and trying to distract myself from the pain I was in. I watched a lot of TV and played video games during this time.
Receiving A Diagnosis
Six months later, in October, I saw the rheumatologist. He suspected something right away and sent me for even more testing. MRI, X-rays, and bloodwork. More of what I’d had, but specific tests my family doctor couldn’t order. I was starting to get worried. It didn’t look like this would be something that would be going away anytime soon.
Four months later, in February of 2018, I was diagnosed with Ankylosing Spondylitis. My initial reaction to my diagnosis was bittersweet. Yes, I had an answer to what I was going through, but it wasn’t some quick fix. This was for life.
I went home from my appointment, which is now such a blur to me, and cried. I was searching as much information as I could, and scaring myself in the process. Over the following months, I had a lot of ups and downs. I was starting treatment in April and was going to become immunosuppressed from it. As I mentioned earlier, I had gotten sick a lot my whole life, so I wasn’t exactly excited to be more prone to sickness than I already was.
I started on a biologic drug called Inflectra, and from then on, things got a lot easier.
Living With Ankylosing Spondylitis
I’ve now lived with Ankylosing Spondylitis for 5 years. I’d like to say I’m an expert at living with it, but to be honest, every day I learn more and more things about my own body. Over the years things have changed, and people have come and gone, but I have definitely learned a lot about myself.
My mom has definitely helped me so much during this whole process. Anytime I need help getting out of bed, walking, or just about anything, she’s there for me. I can’t say just how much I appreciate her help.
My chronic illness has definitely affected all relationships in my life. I have to operate completely differently than I used to. I know what my limits are and I make sure the people around me respect that part of my life. If I need to cancel plans, or if I need to modify them, I need to be surrounded by people who are going to accept that, not shame me for it. Friends have definitely come and gone over the years, but I’ve found my group of people that treat me how I deserve to be treated, learn from me, and respect how my life has changed.
Connecting With Others
I turned to social media to post about AS back in November of 2018. I started a blog about my illness in the hopes it would help just one person who was going through something similar. From there, I started posting on Instagram more and more. 2020 is when my Instagram (@totallyfunkless) started to take off.
I started posting videos of my injections of Cosentyx on my page, as well as being as raw and real as I possibly could be about what I go through every day with my disease. This opened up a whole new world of support I had no idea existed.
Helping raise awareness and supporting others on Instagram is one of the greatest things I’ve experienced with my chronic illness. I’ve met so many amazing people from around the world on the platform who just get what I’m going through, no questions asked. I can put out a post or a story with any questions I have and have answers within minutes. It truly is an amazing platform for the chronically ill.
Once I started identifying as disabled in 2021 and using a walker, I was initially very afraid to use it in person, but I made sure to make it something I loved. I spray painted it pink and later on even added flowers and fairy lights.
From then on, after posting about it and getting more confident, I started to inspire other younger people who need mobility aids, but like me, were initially afraid to use them due to society’s judgment.
I’ve gotten quite a few messages now from people all over the world who have either gotten a cane, walker, or wheelchair because of me. Some of them even decorate their mobility aids as well, just like me! This always brings a smile to my face and shows me what I do is worth it. Just like when I started, I said, ‘If I can help one person, it’s worth it.’ I’ve been shown that I’ve helped many over my 5-year journey with Ankylosing Spondylitis.
I would like others to know that asking for help and sharing your story is nothing to be ashamed of. Just because you were given an illness that makes you feel isolated and alone, doesn’t mean you are!
When I was first diagnosed I felt incredibly alone, being a 22-year-old with arthritis. But when I opened up to people and shared what I was going through, my experience with my illness and my body only got better and better. I’m no longer afraid to tell new people about my illness, in fact, I tell people upfront about it! I’m proud to be chronically ill and disabled! I’ve gone through so much and I’m still here fighting, and that is something to be so incredibly proud of.”
This story was submitted to Love What Matters by Steff Di Pardo of Mississauga, Ontario, Canada. You can follow her journey on Instagram. Be sure to subscribe to our free email newsletter for our best stories.
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