Rolling On With HS: Why I Made The Decision To Start Using Mobility Aids
I have had HS since I was 13 years old. All through high school, it spread across both my inner thighs and my groin. My doctor first suggested using a cane at 16 due to how often I was forced to limp or waddle like a duck when I had lesions on both legs, but I was mortified at the thought of using a mobility aid and was in a special musical theatre program in my high school that was very physically demanding that I didn’t want to give up. So I refused and went on as I was, sometimes having to literally crawl up the stairs to my house at the end of the day to collapse in an Epsom salt bath, begging the lesions to drain and the antibiotics to work.
The words I was dreading to hear
At 18, I started working my dream yet albeit a very physical job as a dog trainer, and worked my way up to the manager of a boarding and training facility. There were days when I would work 16 hours in a row doing overnight shifts, lifting dogs in and out of kennels, doing agility and service work, training puppies, assisting with grooming, etc.
As the years went by and my disease progressed, my doctor pushed me to consider surgery, and if not to at least consider taking more time off work. Neither of those seemed like viable options to me, but after landing in the hospital multiple times a month for months on end for incision and drainage procedures, I knew something had to give.
Finally, I agreed to take an assistant store manager position which would be a much less physical job (even though I would still be standing and walking for 8 hours a day), and I thought that change would be enough. Sadly, within 3 weeks of my new position, I was back in the hospital with a monster flare that required me to be put under a general anesthetic so they could remove a significant portion of the skin around the flare that had become infected. After years of anguish, I knew something had to give. I went back to my doctor and begged her to help me figure out a way to keep my job, and she said words I hadn’t even realized I was dreading to hear: “You should consider trying a wheelchair.”
A silver lining
All my internalized ableism came out of the woodworks. As I got measured for the chair, I cried. When we were picking out seat cushions and working with the mobility aid company, I was devastated. When delivery day came, I could barely get out of bed. I resented my health and when it came down to it I was resenting myself. All I wanted was to keep my job, but the thought of ‘becoming disabled’ (Even though hello Coop - you were already disabled, you couldn’t walk or stand for longer than 15 minutes without bleeding through your pants and wanting to cry!) at 23 was heart-wrenching to me. I felt like my life was absolutely over.
But then, something amazing happened.
As I wheeled into my first day of work in the chair, my co-worker Haley turned around and said “Oh my god, I’m so happy for you! Now you won’t be in pain!” Their positivity hit me like a ton of bricks in the best way possible. They were right - I WASN’T IN PAIN! For the first time in 10 years, I worked a full day without needing to change multiple bandages, scrub blood stains out of my uniform, or crying when I got home. The second day was even better - I didn’t have to change a single bandage until I got home, or take a pain killer throughout the day!
As the weeks went by, I started to realize something: using a mobility aid wasn’t a punishment for being sick, it was pure FREEDOM! I could 'walk' my dog again, go on day trips with my partner, clean my house, have energy left at the end of the day, and so much more!
Now, it wasn’t and isn’t always a walk in the park. Being an ambulatory wheelchair user (a wheelchair user who can still walk but needs the wheelchair to reduce symptoms or for safety reasons) comes with a lot of judgment, ableism, and hassle. Customers would make inappropriate comments, my boss was a total jerk about it (One time he even asked if I could 'just forgo the wheelchair' that day because we were going to be busy and my chair 'took up too much room in the aisles'.) and random people on the street would make really inappropriate comments.
Check out Part 2 for this series!
On an average day, how would you rate your anxiety related to HS?