When I was first diagnosed with ankylosing spondylitis (AS) in 2017, I quickly became bedridden within 2 weeks of my initial symptoms. I was 21 at the time. For about 3 months, I could barely move, only leaving the house to go to doctors’ appointments and physiotherapy.
My AS tends to affect my lower back, hips, and knees. When I was finally able to move around a bit more, I would start to use a cane around my house and when I went to friends’ houses.
It’s not so easy being a 21-year-old who needs a cane. People look at you differently and they ask a lot of questions. Here’s how I learned to accept the fact that I needed one, and how it helps me with my AS.
A very difficult pill to swallow is the fact that you need help. No one wants to feel like a burden or like something is wrong with them. Accepting that I needed help took me a long time to get used to.
When you’re first diagnosed, you’re in a state of denial for a little bit. It’s hard to wrap your head around the fact that you’ll be sick for the rest of your life, so you kind of ignore it for a while. At least I did.
At a certain point, things start to get harder to deal with. The pain, fatigue, and doing the simplest of daily tasks became difficult for me. That’s when I started to realize that maybe I did need help with certain things.
I asked my mom to help me get dressed because putting on pants was too painful. She would also hand me the shampoo and conditioner bottles while I was in the shower because I couldn’t bend down. Small things like that made a huge difference for me.
I slowly began to accept that I was chronically ill and that asking for help wasn’t the worst thing in the world.
Even after accepting the fact that I needed help, it still took me a while to actually move forward and get myself a mobility aid. One of my close friends actually kick-started me into getting a cane.
We took a trip downtown and found a beautiful wooden cane in an antique store. That was the push I needed. Who knows when I would have gone and gotten one myself? I also wanted a unique one, because that’s the kind of person that I am.
Whether it’s a cane, a scooter, a wheelchair, or a walker, if you’re having trouble getting that initial courage to get a mobility aid, bring a friend or family member. Having my friend with me definitely helped my self-esteem.
Once I had my cane, it made it a lot easier to convince myself to actually use it. I now had something to help me walk when my body hurts too much, instead of holding onto the wall and walking slowly around my house.
In the beginning, I often practiced using my cane at my house. On my bad days, I would use it both inside the house and outside when I wanted to sit in the sun.
It was definitely a big adjustment for me to use a cane even just at home. I’m the type of person that doesn’t ask for help ever, so this was a huge step for me.
After practicing at home with my cane, I started to take it to friends’ houses more when I needed it. I would use it here and there, instead of dealing with pain or asking my friends or family to help me get up the stairs.
I may have taken a bit longer to do some things, but not relying on other people for help was a huge step for me. I gained some independence back.
The thing with AS and other chronic illnesses is that symptoms come and go in waves called flare-ups. One day my pain can be totally manageable, and the next, I’m in bed and barely able to move.
That’s why it’s always good to have a mobility aid ready for when you need it. You never know when you will.
Steff Di Pardo is a freelance writer living just outside of Toronto, Canada. She is an advocate for those living with chronic illnesses and mental illnesses. She loves yoga, cats, and relaxing with a good TV show. You can find some of her writing here and on her website, along with her Instagram.