When my ankylosing spondylitis and fibromyalgia were at their worst, I was unable to walk or stand on my own for more than a couple of minutes. It was extremely disheartening and frustrating because it felt like my body was giving up on me. After a few months of dealing with it as best as I could by opting to sit or lean whenever possible, I realized that the trouble I was having wasn’t going away anytime soon. I was 21 years old and couldn’t believe this was happening to me. I was frustrated with not being able to do anything anymore and decided it was time to do something.
I started by looking at disability social media pages to see what mobility aids other people with chronic pain use. I also searched “ankylosing spondylitis” and “fibromyalgia” with “mobility aids” on Google and found some helpful articles that discussed people with chronic pain using mobility aids. From everything I gathered, what seemed most applicable to my struggle of not being able to walk or stand without leaning on something for support was using a walking stick/cane or crutches.
I opted for a cane because I thought a cane might be easier to use than crutches, given my limited knowledge and experience with mobility aids. I researched a bunch of different canes and eventually decided on a foldable cane with a three-pointed base. I chose a foldable one for the convenience of storage and because I was not sure how often I’d need it or if I’d need it for the whole duration of an excursion. I chose the three-pointed base because it might offer me more stability when outdoors.
Everyone in my life was confused when I started using a cane. They had no idea I was struggling so much. They were also confused by the fact that I just went out and bought one and it was not prescribed or recommended to me by a healthcare professional. I have faced a lot of stigma and scrutiny for being a young person with a disability and was afraid that talking about potentially needing a cane with my doctor would be met with dismissal due to my age. At that point in my life, that would have deterred me from getting a cane and I just knew deep down that I needed it. Over time I’ve bought more canes and now I have three. One is fancy, one is my “everyday cane,” and one is a foldable cane I can keep on hand when I use a walker, which is less frequent and only during bad flare-ups.
Getting a cane was one of the best things I ever did for myself. I finally was able to stand and walk for a little longer. I still needed to sit and rest often but I could do more with the cane than I could without it. I didn’t know how long I’d need to use the cane but I always thought it would be temporary. Now here we are, three years later, and I use it every day. Not only does it help me deal with pain and fatigue, but it also prevents worsening them so I’ve always got it on my person and it’s been so helpful. I still get a lot of stares and have uncomfortable conversations where people question why I, a young person, need a cane, but it doesn’t get to me the way it used to. I’m just glad I can do more and am so grateful for a tool that makes that possible for me.