Being someone with an invisible anything—chronic illness, gender, race, sexual orientation, religion or spirituality, mental health issue, etc.—is such a double-edged sword. Today I’m going to focus on chronic illness since that’s why we’re here. On one hand, we often get the privileges of walking through the world and people assuming that we are a certain way. On the other hand, we walk through the world without being seen as needing assistance.
So then we have to….ask.
One of the hardest things to do. When we’re already living in fatigue, pain, and all kinds of wacky symptoms on top of doing life. Right.
And then it’s not just asking. It’s revealing something about ourselves that might not have been known. Changing how others see us, and maybe even how they act towards us. This can go either way, of course. Disclosing our conditions might get us connected with the help we need, but it could instead mean that we are treated with kid gloves or politely passed over for things.
So when is it worth the risk?
Some people are of the school of thought that you should disclose right up front as a test. Then if they don’t take it well, you haven’t wasted any time and can go on to the next thing. Their loss.
Others say you shouldn’t disclose at all and just keep sucking it up. This can avoid some problems, but it also takes a lot of energy to remember what not to talk about and to keep that smiling face on all the time. It becomes even trickier if an invisible illness suddenly develops visible symptoms.
There’s an in-between option as well, supported by an article in Scientific American that I recently read. The article was about mental illness, but I think there are parallels. Taking some time to get to know a workplace and the people there allows us to feel out the climate. We might get to observe how coworkers and managers respond to another people who has a health issue. And we also give them time to get to know us, to establish a reputation for our work. Then, if we decide to disclose our health condition down the road, they are looking at a whole person that they know rather than an illness (or at least that’s the hope!).
If you do decide to disclose, first think about what you want to get out of telling your manager or coworkers. You’ve probably already found that non-spoonies can be really kind but don’t always get it. If you’re telling them because you hope that they will now magically understand everything about you, I’m sorry to say that it’s probably not gonna happen. Decide what specific accommodations or assistive devices you need and ask for those. Stay focused on the practical, concrete things. Empathy isn’t a reasonable accommodation, unfortunately. (I wish it was!)
Some examples of this include moving to a quiet desk or one where you can have your back against a wall, being able to wear a hat or sunglasses if the lights trigger symptoms, being able to sit in a stand-up meeting, access to dictation software or services, and so on. The ADA website offers more suggestions.
Everyone is busy at work these days. Keeping your request short and practical increases the probability that it will be heard. Of course, there are no promises, and every workplace is so different, so only you can know what’s right for you. But if you do decide to disclose, I hope these tips are helpful for you.
Cloaking and uncloaking is a bit of a spoonie superpower as well as a burden. Remember that you deserve help as much as anyone else, even if our society doesn’t always get that. Someone’s “no” isn’t a reflection of your worth as a human being. You’re enough just as you are!
If you found this post helpful and would like to find out when I update the blog, plus find out your own unique chronic illness coping style and get personalized tips (and cute animal pictures), check out my Spoonie Superpower quiz. And keep being sweet to your spoonie self!
