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

Others, including potential employers, too often label me by my illness alone

Ann Reynoso avatar

by Ann Reynoso |

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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?”

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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.


Bruce Anderson avatar

Bruce Anderson

I have had PF for 8 years. Oxygen 24/7 for 5. I move through the world normally. Few comment on the oxygen. If they inquire, I answer the question and then move on with the conversation. While I don't think the "stigma" is all in your head, I do think your way of being has something to do with. I have been in conversation with over 50 people with PF over a number of years and have never heard the word "sigma" once. Take a look at and see whether this kind of support group would be for you. Best wishes Bruce

Marti Darling avatar

Marti Darling

I'm with Bruce! I was embarrassed at first, got tired of that and got over it. People ask me about it and I am glad they do. I get past the sad stuff because it is like life. It is the way it is. I don't have a death sentence I just choose to live my life until I die and I still have no idea when that will be. There is no countdown clock I can see. I went through some dark stuff at first and cried a lot of tears. Ann, you look like a woman with gumption. I think you will go on to better experiences with this and ignore the stigma.
I picked up take out last night. Dinner for me and my friends. The woman who owns the place handed me my order and started asking me about my nose tube and the Oxygen Collector on my back. Her reaction to what I said was complete admiration! I have never had that happen before! I smile at everyone because I always did. She wanted a hug before I left with my order. She wondered why I was picking up the order. I said one woman hurt her wrist and couldn't carry the other is on medication and older than I and now am the strongest one able to do it. People are great if you give them a chance. Who cares about a 'stigma'? You will be fine.

Nancy Padilla avatar

Nancy Padilla

Hi Ann: I don't feel my pulmonary fibrosis is a stigma at all. It is what it is. I have never had anybody ask me about my illness because I continue my life as I have before I was diagnosed. Sure it is difficult but life goes on and you have to do the best you can under the circumstances. I have good days and bad days and it is difficult to deal with the bad days but I just do. You sound like a strong woman and you will find a way to get through the problems you are dealing with. I admire that you are still able to work and help people. Staying busy in daily life is what helps me in the long run and I have been like this my whole life so staying busy comes easy for me and it helps me cope with my illness. Keep up your amazing work helping people and keep smiling. A smile can do wonders for you and for others. Stay strong. Nancy


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