Overcoming my fears about using a wheelchair with Cushing’s disease

In the past year, as I’ve been dealing with a recurrence of Cushing’s disease, I’ve found myself needing a wheelchair for myriad reasons. My bones are brittle, my muscles are weak, I have vision issues, and I’m at risk of fainting. Furthermore, I have extreme fatigue, which will only worsen if I eventually have transsphenoidal surgery to remove my pituitary tumor.

This is my first wheelchair, so I chose a “rent until you own” prescription option. This basically means my insurance and I make monthly payments. Once it’s completely paid off, I’ll own the wheelchair.

My fears

At first, being a wheelchair user made me feel like a failure. Was I not trying hard enough to feel better? Did I deserve the label “disabled”? Was I taking away space from people who need more assistance than I do? What about when I wasn’t using my wheelchair? Could I still use the accessible bathroom stall? Even though my wheelchair was prescribed to me by a medical professional, I felt invalid using it.

Another fear was that I’d have a less exciting life. Having a wheelchair limited where I could go and what I could do. If events weren’t entirely wheelchair accessible, I’d have to miss out. I live in New York City, the land of walk-ups. I can’t even count how many parties and invites I’ve had to turn down because I couldn’t make it up the stairs.

Lastly, I worried about being a burden. While I can guide and move my wheelchair myself, I often need assistance. My arms grow weary pretty quickly, and I end up fatigued and exhausted, so I tend to need someone to wheel me around.

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The truth

I’m not a failure. Being sick isn’t my fault, and neither is needing a mobility aid. Furthermore, clarifying that I’m disabled doesn’t take away from others with disabilities. However, I do want to note that it’s important to use our voices to amplify other advocates and address the lack of equity in the disabled community.

I don’t have a less exciting life. In fact, my wheelchair enables me to attend more events without feeling sick. It allows me to feel safer and cared for. My wheelchair keeps me safe, and I’m very grateful for that. On the rare occasion when I do have to turn something down, I can appreciate that I’m not pushing myself to exhaustion just to socialize.

I’m still working through feeling like a burden. Thank God for therapy!

The takeaway

The important thing is that embracing the labels “chronically ill” and “disabled” has helped me feel more comfortable as a wheelchair user. It’s easier to ask for accommodations when I’m not doubting myself. Adjusting to a new body can be hard, so it’s important to get help where I can.

I would love to hear about your experience with mobility aids! Please share in the comments below. You can also follow my journey on TikTok and YouTube.

Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.