To Overcome Impostor Syndrome, I Must Accept My Disability

Eleanor Bird avatar

by Eleanor Bird |

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It is strange to be diagnosed with a disability as an adult. I’ve lived with pulmonary hypertension for over four years now. In some ways, it feels like a lifetime — I feel like I can hardly remember pre-PH me — but I have really struggled to get used to some things.

Reframing my perception of myself as someone with an invisible disability has taken time. And despite the seriousness of my illness, I sometimes find impostor syndrome sneaking in and making me feel unworthy of accommodations I would champion for anyone else with a disability.

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Where My PH Diagnosis and Disability Identity Intersect

For example, in the U.K. we have a public transportation program that provides “Please offer me a seat” badges and cards to those who struggle to stand. I have worn the badge a number of times, but every time, the same thoughts run through my head. “Everyone thinks I’m faking. Maybe I shouldn’t be wearing this. How badly do I really need to sit down?”

I know that if I stand for an extended period of time, I will experience joint pain, swollen ankles, and fatigue. (Some of these are side effects of my medications, while others are symptoms of my PH.) Despite my discomfort, I still feel unworthy of asking for a seat.

Similarly, when I opt for disability seating at events and concerts to ensure I have a seat and a little more space, I often feel like a fraud. I’m anxious that someone will find out I’m not really disabled — except, I am.

My partner can tell when I’m struggling with impostor syndrome and will say, “It is completely valid for you to sit in the disabled area. Your heart and lungs don’t work properly, remember?” Oh yes, that.

That said, I am very aware that there is a big difference between the lived experience of those with invisible and visible disabilities. For example, a person who uses a wheelchair may experience different types of discrimination, exclusion, and ableist microaggressions than I do.

However, not having a visual cue that signals I might need extra help, or might not be able to do things everyone else can, makes it harder to advocate for what I need.

When you have a serious condition, self-advocacy goes beyond simply asking for a seat. It might include requesting reasonable adjustments at work, or applying for government financial support. I have realized that in order to ask for and receive the support and flexibility I need, I must first accept that I live with a disability.


Note: Pulmonary Hypertension 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 Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.


Beverley Ann Hoskins avatar

Beverley Ann Hoskins

An older person than myself said the other day to me.."You look like an athlete." I had joined a group walking club after several years of absence. Always trying normality. This proved to be a large mistake. I could not keep up with these friends. I obviously started standing tall and erect...and had to hovel back to car! The above article was so correct. Huge lifestyle changes when one has an invisible disability..


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