Being open about your chronic illness can often be as difficult as coming out of the closet about your sexuality. In both cases, you rightfully worry that you will be judged, that you won’t be accepted, and that opportunities may be taken away from you.
Chronic Mom shared a great post about her experience coming out of the chronic illness closet, about how difficult it is knowing when to tell people that you have a chronic illness. She shared her struggle with knowing when to tell new friends about her illness.
There are many situations in life where I’ve had to decide to be open about my chronic illnesses and how they affect me.
Doctors – Any time I see a new doctor I question if I should be open about the fact that I have fibromyalgia. If I’m not seeing the doctor for something that I know is related to fibromyalgia, I’m very hesitant to be honest with them that I’ve been diagnosed with it.
Too many doctors still have a very firm bias against fibromyalgia and either a) dismiss everything I say and decide I’m a hypochondriac, or b) want to blame fibromyalgia for every symptom I experience and refuse to look further (or both).
I question whether to put it on my history form. Early on I often left it off the form, but these days I usually do include it (and just hope the doctor doesn’t notice it), or better yet that they turn out to be a good doctor who understands that fibromyalgia and real and it doesn’t mean I may not be suffering in other ways as well.
Teachers – I finished my undergraduate degree at 40 years old, well after chronic illness entered my life. I had a “Letter of Accommodations” for my college classes, listing out the specific accommodations that are expected from my instructors so that I could have the same opportunities as other students.
It did NOT tell the instructors WHY I needed those accommodations. I’ve been told that I should not tell instructors what my disabilities are because it can create bias (this is based on disabilities in general, not my specific issues), but I have told some of my instructors what some of my issues are. Some have figured it out (the need for sunglasses inside makes the migraine issue pretty obvious).
When I did tell an instructor about my illnesses, I usually waited until after I’d finished their class to be honest about it, or until something came up where it would be helpful for them to understand my limitations in a different way.
“Boss” – I am self-employed but I take on clients. Those clients are effectively my boss while I’m working for them. Usually, they are well aware of my conditions simply because chronic illness makes up a large part of my portfolio. However, while I was in school, I volunteered in the research labs. Usually there would be a graduate teaching assistant (TA) overseeing my work. Each week they had a “lab meeting” with all the research assistants. I was told from the beginning that volunteers weren’t required to show up, but I wanted to be there.
The first couple of weeks I found myself emailing the TA to let her know that I wouldn’t be there. One week there was a special event during the meeting time and I emailed her to find out if we were stilling having the meeting or if it was just the special event. Her response to that email left me feeling like it was time to tell her about my illness so she’d know that I’m not a flake. I was nervous when I tracked her down and told her, and I still didn’t tell her my diagnosis. I just let her know that due to my chronic illness I’m usually pretty much dead by Friday (the day of the meeting) and I probably wouldn’t be there unless I was told I needed to be. I asked her to please let me know if it was important that I be there. She was very kind about it and understood without any issue.
Classmates – I told classmates about my diagnoses a few times. Usually, it was to help them understand the fog that I was experiencing right in front of their eyes. The one time that really comes to mind was when I was working with a group on a project and I found my brain doing that thing where it doesn’t want to let words get from my brain to my tongue. I explained my illness to them and how it would affect my communication. I think doing this really helped in that situation.
I typically decide on a case by case basis whether or not to tell anyone about my illness. Classmates obviously know I have accommodations when they see me doing things they aren’t allowed to do (like use a laptop to take tests), but what they know beyond that is up to me, and I rarely feel the need to tell them.
When do you find it important to come out of the chronic illness closet? When do you find yourself preferring to stay in the closet?
How open are you about your chronic illness? What are the deciding factors on who you tell, what you tell, and when? Share on X
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Cristine Shuldberg says
i have learned from other areas in my life to be open. 1st i am an open and proud lesbian and was a front runner in my town when it was not popular. 2nd i am an alcoholic and have been sober for over 35 yrs. so i live my life being out of every closet including my illness. but i do find that people still do not understand. i explained the spoons concept to someone last night for the 1st time and it made it easier for her to understand.
Julie says
Cristine, you have certainly overcome quite a bit. I do think the Spoon Theory is very helpful in explaining our situation to others. Thank you for sharing your thoughts.