I Often Find Myself Downplaying My Invisible Illness

Charlene Marshall avatar

by Charlene Marshall |

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One of the unique challenges of living with an invisible illness is figuring out how to tell others. Although I’ve lived with idiopathic pulmonary fibrosis (IPF) for five years, it’s still not easy for me to disclose my condition. Most people wouldn’t know that this life-threatening and relentless disease has ravaged my lungs, and sometimes, it’s easier that way.

Because disclosing my illness is uncomfortable, I often downplay it, even though I know this isn’t safe or healthy.

Downplaying IPF makes it feel less real, and allows me to shield others from the ways my disease may affect them. Dealing with “lung stuff” can be scary, and I’ve noticed people treating me differently after I’ve had an exacerbation or dyspnea episode in their presence. Many say they see me first and my disease second, but sometimes I question whether that’s true.

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IPF Cognitive Struggles: Does Disclosure Carry a Risk?

It’s easy to downplay my illness because I don’t usually look the part of someone with a chronic, debilitating lung disease. IPF typically affects adults over 50, and I’m in my 30s. Though I’m often short of breath, you wouldn’t realize it unless I was using my supplemental oxygen. I often look healthy.

Facing reality

I recently disclosed my invisible illness at work, though I admittedly downplayed its severity. My employers then asked me to have my functional abilities assessed and documented by my pulmonologist to ensure my safety in the workplace.

The assessment form includes a list of tasks, such as walking up and down stairs and carrying heavy items, and I must place a check mark next to each one I can physically and mentally complete. It feels like a public display of everything I’m no longer capable of doing. I know it’s intended to keep me safe, but it’s hard not to feel vulnerable when my abilities are being documented and shared.

When I was asked to complete the functional abilities form, I obliged, but I also started to cry. I explained that even after five years, I’m still processing the fact that I have an invisible illness. The assessment makes it feel real, and it becomes much harder for me to downplay the severity of my condition.

While never easy, disclosing an invisible illness in places of employment, worship, or recreation gives others the opportunity to implement precautions that can keep you safe. That said, the process can be difficult and emotional, so be gentle with yourself, and only disclose when you’re ready.

Have you ever had your functional abilities assessed? Please share your thoughts in the comments below.


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.

Comments

Sandra Hicks avatar

Sandra Hicks

Thanks for your comments. I was diagnosed with COPD for years, just saw pulmonologist after having covid and told don't have COPD have IPF. I am retired so have not functional abilities assessed.

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Charlene Marshall avatar

Charlene Marshall

Hi Sandra,

Thanks for reading my columns and reaching out via the comments. Sorry to hear it ended up being IPF vs. COPD, both lung diseases are so difficult to manage and wish you weren't dealing with either.
Stay safe,
Char.

Reply
jim richter avatar

jim richter

Char,
Your employer should be congratulated for making an attempt to adapt your employment to your abilities.
You are young enough to be a candidate for a lung transplant, which seems to be the only effective current treatment, albeit with high risk. My hope is you are getting good medical care.
I try to be open about my recently diagnosed IPF (late 2020) because public awareness can make others with IPF feel less isolated. I live independently in a large urban senior apartment complex with elevators. We try to help each other as much as we are asked and able. Most of us have received Covid vaccine doses but still usually self isolate.
Orphan diseases get less research because they lack huge potential financial rewards.
My age is over 80 so my life has been longer, and is also better, than many. I use a constant flow oxygen concentrator with a nasal cannula at 2 lpm when sleeping. Every day has been a gift.
My pulmonologist is on the faculty of UCSF and I have no complaints.
Jim

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Charlene Marshall avatar

Charlene Marshall

Hi Jim,

Thanks so much for your comments. Yes, I am happy they gave the form for my abilities to be assessed in an effort to keep me as safe as possible, however, how that went down wasn't an ideal experience for me. In my opinion, there's still lots that needs to be done to improve how companies handle invisible illnesses or disabilities, such as IPF. Continue to be well and advocate for awareness of this disease; you're totally right, it's needed :)
Take care,
Char.

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Mary Geissler avatar

Mary Geissler

I, too, find it very uncomfortable and hard to share with others - except my husband, of course, my daughter and sister. I have other close family members who look puzzled, as they know my mother died of this disease and I think they secretly wonder why I can't say I have it, too. I say "lung issues" - but like you, I LOOK normal, and if not using oxygen you wouldn't know I was sick. But I am also sort of retired, although my husband and I have a business so I can work from home. I can nap when I want to and eat when I choose. I dread sympathy. I hate appearing needy and sick. I made up my mind I will NOT use the dreaded words of my true diagnosis until I have to - absolutely have no other option. I make excuses for myself all the time - 'oh I just need a little more time to walk there' - "old age - so slow!!' "hey, can you let me off at the door?" --stuff like that. I know the day is coming, and if I am approved for a single lung transplant within the next few months, then my secret of course will be out. But I take courage from those on these sites who are living for over a decade with this - I have no other health issues at all so I plan to extract every healthy day I can.....until I can't.

Reply
Charlene Marshall avatar

Charlene Marshall

Hi Mary,

Thanks for reading my columns and reaching out via the comments - I appreciate hearing from you! I share so many of the same sentiments, especially about the sympathy piece. It's hard to deal with this disease on our own, let alone "hold" the emotions of others who struggle with us having it ... that isn't something I want to take on, and sometimes the easier solution is to just not share. Take care and good luck with the transplant evaluation.
Char.

Reply
Conni avatar

Conni

I struggle with this . When people want to help
I appreciate it and often need the help but it makes
Me deal with things I never had to deal
With before. I was always the strong one now for sure
Not!

Reply
Charlene Marshall avatar

Charlene Marshall

I completely agree with you, Conni! Hang in there and reach out anytime.... you aren't alone, even if you feel you are no longer the strong one. Much love to you.
Char.

Reply
Toaksie Honan avatar

Toaksie Honan

it seems unreal to me at times, i have good days and not so good days. people, even in my family don't seem to care about it, probably because it isnt a reality to them and they've never even heard of it. that seems to make someone with this a CCOMPLAINER or WHINNER, so just suck it up and deal with it myself.
i appreciate hearing about others who share it helps. i now am on oxygen at night and have inhalers for emergency use, otherwise i get by im 77 now so shouldn't complain. thanks

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