I Often Find Myself Downplaying My Invisible Illness
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.
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.
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.