The everyday roadblocks I encounter with an invisible disease

Having a rare disease results in many complex problems, some of which can be debilitating.

This has been my experience over the past six months as I’ve struggled with pulmonary fibrosis (PF) and heart issues due to atrial fibrillation with rapid ventricular response. While managing my health is challenging, contending with everyday frustrations and roadblocks makes it even more difficult.

Following are some of the barriers I face as someone with a rare and invisible disease.

Accessibility

One frustration is my hometown’s lack of accessibility in many public spaces.

Restrooms are hard for me to maneuver, especially when I’m carrying portable oxygen tanks. Stalls are often so small that I find it hard to move freely, and most don’t have a hook where I can hang my portable oxygen backpack, forcing me to place it on the bathroom floor.

I also find it irritating that many public places don’t offer electrical outlets. Because I live outside of the city, it can take me almost two hours to get to my doctor appointments. For that reason, I try to schedule all of my appointments, tests, and treatments for the same day. Still, to keep my portable oxygen tanks charged, I must either replace the battery or plug into an outlet. The two battery packs I have don’t always last the whole day, and finding an outlet at the hospital is difficult.

Parking is another worry of mine. There often aren’t enough disability parking spaces, and when there are, I still have a long way to walk. Most hospitals in the city have valet parking, which I now take advantage of, but not without burning a hole in my pocket. The cost of valet parking can be outrageous.

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Judgments and stigmas

The stigmas surrounding oxygen use and being overweight always have me on edge when I’m in public. I feel like I’m being judged because people don’t realize I have a rare illness. I’ve heard many other patients like me share experiences of being stigmatized and judged while living with an invisible disease.

In my previous column “Fighting Weight Bias in Healthcare While Living With a Rare Disease,” I wrote about the stigmas I’ve encountered in medical settings, with many providers focusing more on my weight than my PF. While there can certainly be benefits to losing weight, these conversations become difficult and uncomfortable when doctors ignore my underlying health issues and simply criticize me.

Accommodations

Asking for accommodations shouldn’t feel like you’re twisting someone’s arm. No one with a disability should feel like they don’t deserve support.

Under Title I of the Americans with Disabilities Act, employers are required to provide reasonable accommodations to workers with disabilities. According to the U.S. Department of Labor’s Office of Disability Employment Policy, “A reasonable accommodation is a modification or adjustment to a job, the work environment, or the way things are usually done during the hiring process.”

After taking a break due to my health and the pandemic, I recently decided to return to teaching college courses part time at high schools. Unfortunately, most schools don’t have enough parking close to the building, making it too long of a walk for me. I asked for parking accommodations so that I wouldn’t have to walk so far, but my request was denied.

This upset me as someone who is clearly oxygen-dependent. I once again felt the sting of disapproval, stigma, and exclusion. This made it hard for me to return to teaching, especially once I realized I’d need additional accommodations.

Awareness

These issues have made me increasingly aware of the frustrations and roadblocks many people with rare diseases face. I believe it’s important for everyone to be treated fairly, so I’ve become an advocate for those facing barriers in healthcare and in general society. I want people and institutions to practice inclusion and let go of harmful stigmas. In my advocacy work, I focus on removing bias and discrimination from the equation.

Society must do better in its understanding of people with rare diseases, both visible and invisible. We all deserve accessibility, acceptance, and fair accommodations.

Note: Pulmonary Fibrosis 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 Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.