How I’m dealing with disease stigma because of my pulmonary fibrosis

Have you ever had the nagging feeling that a gray cloud was hanging over your head? For the past three years and 10 months, I’ve felt such a cloud. It comes from being labeled and stigmatized for my disability.

Stigma can be described as a deeply discrediting attribute that labels certain social groups as unfavorable. I’ve certainly felt that sort of discrediting for my illness and disability, or for simply being a person with shortcomings. That’s been the case since I was diagnosed with pulmonary fibrosis. It’s become clear to me that I’ve lost myself under this label.

For a while now, I’ve allowed others to label me however they saw me. At lunch with my brother and several of his friends, for example, the first thing they told me was not “Hi, how are you? Nice to meet you,” but “Is this the sister with the lung disease?”

Recommended Reading

July 23, 2020 Columns by Charlene Marshall

It’s Time to Stop Stigmatizing the IPF Cough

The whole conversation became about my pulmonary fibrosis. How did I feel, they asked, after finding out there wasn’t a cure?

I wanted to scream, “You know, I did have a life and career before my illness! I did not plan this! Stop labeling me!”

I felt invisible to them. And now I feel this label, this disease stigma, follows me wherever I go.

Bias in employment

Finding work has become difficult, as many don’t seem to trust my abilities while I’m fighting to get back into teaching. I feel my illness has led search committees to weed me out from the pool of applicants, my competition. I’ve been told that I’d be considered unreliable if asked to teach a class.

As a sociology professor, I always taught my students about societal inequalities and disadvantages, especially for people with disabilities. I have a different perspective now that I’m the one experiencing those inequalities. No one should feel the gravity of losing out on employment because of illness or disability.

I’m frustrated that I’ve yet to accomplish what I set out to attain in my career. I’m no longer young, and my working years are becoming limited. I won’t be able to improve my retirement fund through Social Security without more work.

There’s no one to blame for my illness, but I’d like to live my life free of labels and stigma.

I believe, however, that the barrier I’m experiencing now will be temporary and I’ll accomplish my teaching goals. In the meantime, I have small side jobs to help with my healthcare premiums, medications, and doctor visits. Meanwhile, I’m waiting for the time when I’ll be taken seriously for my professional abilities, rather than being seen as a burden.

Stigmas are hard to get past. After all, my illness will never go away. It’s become a part of me. But it’s not who I am.

I want to be seen as someone other than “the sister with the lung disease.” I want to be seen as an accomplished person. I want to be given a chance to prove that I’m more than someone with pulmonary fibrosis.

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.