What in the world is an invisible illness? It sounds like something invented by Ferris Bueller to take another day off of school.
Not quite.
What is an invisible illness?
An invisible illness is an illness that is not detectable to the human eye. A person can be walking around right in front of you, and you may not realize they have mental health issues (on a good day), as an example. The CDC estimates that 10% of the 61 million Americans with disabilities have an invisible illness.* My guess is that number is low as many illnesses are not reported.
Why do we care if an illness is invisible or not?
Take my chronic pain as an example. To look at me, no one would know I suffer daily bouts of 10 out of 10 pain (on the 1 through 10 pain scale) multiple times a day —- unless you run into me when I’m in the middle of one. I can go around undetected.
Being stealth about my pain has plusses and minusses. On the plus side, I don’t have to hear pity from others. I can appear to function as a normal member of society.
On the plus side, at work, if my boss doesn’t know about my pain, and how debilitating it can feel when it hits, then he won’t hold back special assignments or think that I am incapable of doing my job. I fear being seen as incompetent so this is very important to me.
On the minus side, if my boss does know about my pain, and how debilitating it can feel when it hits, he may be confused about what I am capable or not capable of doing. He will only be able to base a decision based on what I produce (or what I don’t produce). Having my boss confused about me as a performer on his team is not where I want to be.
When my pain is at a 10, I definitely qualify for being a disabled person.
What does that mean when it’s not a 10? Or not in the 7-10 range? In those times, I am perfectly able to complete my work assignments, show up for meetings, and be present and do the expected multi-tasking of responding to chat messages, while in a meeting, from someone who can’t find time on my packed calendar to meet with me.
I can do the back-to-back-to-back meetings with no breaks. Although I needed the Mayo Clinic to point out to me that when I run an entire day like that, with no breaks, I’ve just pushed all my pain out to the end of the day.
Now my personal life is impacted by debilitating pain, but I completed a mostly successful day at work. It’s a new threshold in the work-life balance dance. If I want my home life to experience a reduction in pain from a 10, I need to either take breaks in between meetings (or at least every 2 hours), change my hours to part-time or change jobs.
Another new tool for me is to use mindfulness and meditation. This topic will be addressed in a future article. Here, I’m teeing up an understanding for the need of this tool to be used during short breaks from work and throughout the day, whether you’re working or not.
Impact on sleep
We established when pain is not in the 7-10 range that I can be mostly successful at work. That is, unless I wasn’t able to sleep the previous night because of the pain. This is a common scenario and occurs approximately at least 50% of the time for me. The pain is always worse at the end of a day of just living life, which rolls into bedtime and often sleepless nights. (Sleep is a topic I’ll address in the future as well, including various techniques to try to get to sleep.)
Options at this point are
Sleep in, if I was finally able to sleep at some point.
Start the day and see how I do. I can usually start out decent, but there is a definite drop off midday. I usually push it a little longer, trying to get more work done. (This only has an option to work in a work-from-home scenario, which I’ve been blessed to have since the pandemic times.)
In the scenario of #2, this also can create confusion for my boss or co-workers. I’m better off signing off early and calling it a half day. If I do this too many times though, my boss will start to question my ability to do my job. I would often feel the need to catch up on work once I woke up again in the evening, before going back to bed for the night. This can create a vicious cycle and is another questionable practice in the spirit of work-life balance. Maybe better said, work-life-illness balance.
Moving forward with a work-life-illness balance
Quite honestly, with the fact that my pain has times of a 0-1 ranking during the day, it confuses me too. What am I capable of doing or not doing? Of course I can hold down my job. Of course I can meet you for a walk. Of course I can do all the things.
Until I cannot. Then I have to sign out of work, cancel plans and not do all the things.
I didn’t even know the term “invisible illness” until a couple of years ago. Understanding this term is both enlightening and empowering. I finally understood that my conditions (my many of them — see my About page, if you haven’t already) are considered a disability. Each one of them alone is a disability (with the exception of the caregiver). And each condition as a disability impacts my life as a liability in different ways.
Before understanding this, I thought I had to be able to function like a normal person, without a disability, and that I just had to work harder to get things done and to be successful.
Now, I define success differently
I take care of myself by eating the right foods. Getting proteins and vitamins through my food into my body contributes to a healthier life. I am not perfect and I have not-perfect days.
I work to not overextend myself. (This one is a big challenge for me and I still need to put myself in check sometimes.)
I get at least 7 hours of sleep per night (my doctor’s recommendation of optimal amount) on the nights that I don’t have trouble sleeping.
I’m still working on the mindfulness and meditation. No expert here, but striving to do my best every day.
While I have limitations in some areas, I’ve decided to share my story here as well as what has worked for me and what has not worked, in the hopes of helping you and others.
The fact is — there are so many invisible illnesses. At the time of today’s writing, there are 86 on the list I’ve created here. If you are suffering from an invisible illness, or you know of one, that is not listed here, please message me with the name of it and I will add to this list.
Furthermore, as we start to build a community here at Living an Unlimited Life, I encourage you to share in the comments below about your invisible illness and, only if you are comfortable doing so, what impacts it has had on your life.
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*https://www.health.harvard.edu/diseases-and-conditions/invisible-illness-more-than-meets-the-eye
Such a good read. I love the way you describe it.