On the one hand, what you’re dealing with is personal, private, and uniquely your experience. You don’t want to think that it may affect how you’re treated, but there are no guarantees when it comes to the reaction of others. On the other hand, opening up about what you’re going through can allow for the possibility of others being able to better appreciate your situation, whilst easing the burden you may carry trying so hard to keep it to yourself.
With the list of invisible illnesses being so extensive, part of your decision may depend on how much it affects certain aspects of your life. Telling someone about your chronic exhaustion may, for instance, help them to understand why you sometimes bail on plans and prevent any mix ups as to your reasons for doing so. That said, you may also think, ‘if they cared, they wouldn’t just walk away or shut me out anyway’. You may consider telling a partner, to help that understand you on a deeper level and to be able to share all of who you are with them. If you have health issues that interfere with work, you may consider telling a manager in case there are any reasonable adjustments that can be made to suit both you and the organisation to make life a little easier.
Sharing your invisible illness should be done entirely on your own terms, in your own time, at your own discretion. You should choose not only who you tell, but what you reveal. For instance, you might want to give the bare bones of something, a rough idea of what’s going on, or you might want to share every last detail just to get it all out there in the open! Or, you may decide that there are friends, colleagues and family you don’t want to tell; perhaps they know you’re not always too well, but don’t know why, and you don’t feel like sharing. As long as you are not stopping yourself from receiving the support you need, then don’t feel pressured in to sharing more than you’re comfortable with.
I tend to go for the breadcrumb approach. I let on here and there that I’m not too well, and I’m open enough to casually talk about things like deficiencies, migraines, general pains. With most people, I don’t let on about anything else that is more personal to me, such as my tummy issues or newly appointed stoma (yet!) I’ve confided in my mother far more details than anyone else. She’s there for me when I need to rant, she understands a bit more about what I’m going through, and just being able to tell someone is a huge support.
I feel that I jeopardised a relationship when all of my health problems began (ended it, actually), in part because of my fear of ever saying anything about what I was going through. I was embarrassed, humiliated, and far more reserved back then than I am now. I felt paralysed by the thought of having such a conversation, so I didn’t. I couldn’t continue the way I was, the way we were, trying to hide the problems, and he made no attempt to enquire as to the real reasons behind my decision when I walked away. I’ve learned from that mistake.
What I learned from someone, many years ago, was that sometimes you need to be silly and take the seriousness out of things and suddenly the embarrassment starts to disappear too. Instead of trying to cover something up and inadvertently draw attention to yourself, make it more obvious; do it with intent, confidence and a laugh. I used this approach to overcome some of my social anxiety, and it really worked. Being more open with people also becomes a little easier with time and practice, as does being confident enough to not share the things you don’t want to talk about with people you don’t want knowing. I now feel more assertive in thinking ‘it’s none of their business’ and not feeling the pressure of a guilt trip through someone else’s prying to start divulging my story or explaining myself.
If you find yourself trying too hard to hide away from certain people that are close to you, to make excuses and risk pushing them away, to plan around everyone else so that what your struggling with is never exposed, then you may want to think hard about your decision to keep your illness under wraps. The worst thing that can happen by telling someone, even just the basics or a general idea that you have a condition/illness, is that they will react negatively. If they do, it’s either out of ignorance, surprise, worry for you, or even worry for what that means for them. Give them time, don’t feel pushed to talk about anything you’re not comfortable with. Set the limits and boundaries as you see fit. But don’t be ashamed or embarrassed, dig deep to bring out some confidence in yourself. Be proud of who you are, your strength and what you’ve achieved to get this far. Whether you want to share or not, do it with confidence and in the knowledge that it is your choice, and that you are only answerable to yourself.