Do you tell people about your invisible illness?

 

Do you tell people about your chronic illness?

Why? And why not?

Do you tell people about your invisible illness?

For me, it is a matter of having an invisible disability (obviously more visible now with the cane issue). With an invisible disability, there is a lot of revealing and there is a lot of concealing.

Because we can decide what level of information to give out, if any at all. We certainly do not owe it to people. We do not need validation for its existence. But we can choose to, to help them understand our limitations and needs. And sometimes that is important. Other times, people do not deserve to know. Or are just people there is no need to tell. And with an invisible disability, we have that choice.

I don’t tell people about my asthma or hypothyroidism. They are well managed. Unless it comes up in conversation with someone who has either, then I will.

I rarely tell people about the fibromyalgia because I don’t see the point. I don’t need their sympathy or cures. But I will mention it if it is flaring, because, hell, then I have some serious limitations… or more limitations, I should say.

I do tell people about the migraines because it causes cancelled plans and limits me severely a lot of the time. It is better people understand on bad days I am laid out. And good days are no walk in the park

I do tell people about the vertigo because it limits me severely at the moment. And really people see the cane before they see me, they know something is off. And people ask about the cane, so I tell them. People ask about my tinted migraine specs too, so I tell them.

I vary with depression since it is as stigmatized as fibromyalgia. And if people are close to me they are aware of it. Other people, don’t need to know.

But it is variable, eh? Random people do not deserve my health portfolio. Good friends, I will talk about it. Family, of course, I talk about it. Employers, I limit what I talk about… mostly making them aware of the migraines. Randoms… not so much. I am a reserved person in the real world. Takes some time to know me, so revealing personal information isn’t the top priority in a conversation.

Fact is, when we do we can never anticipate the result of that.

  • Empathy? Sometimes
  • Bland sympathy? Sure
  • Random cures? Oh yeah, that happens
  • Curiosity? Sometimes.
  • Discomfort? Yeah. People do not always know how to respond to illness. Any illness. Let alone a chronic one.
  • Dismissal and doubt? Yeah, that happens. And it is hurtful. Invisible illnesses by nature cannot be seen. So understanding them and knowing the immense impact and toll they have is pretty impossible. People would rather think you are malingering or faking or lazy or weak.

Roll the dice when we tell people. And we have to have a response to their reaction. We cannot predict everyone’s reaction when everyone has different life experiences. They may have had someone go through cancer, which is brutal and say to you ‘at least it isn’t cancer’. And that is wrong, man. Because both are not fun ordeals. And it belittles our suffering and the impact our illness has had on our lives. And that impact can be severe. But people don’t always know what to say. So we have to accept some unpredictability when we choose to reveal. And choose carefully what we wish to conceal.

With my cane, on the other hand, it is visible. And it has been a disconcerting experience to be visible in illness when for decades I have not. People look at the cane before they look at me. They are insanely polite. Opening the door long before I get to it. Letting me in front of them in line-ups. Weirdly nice things. Ask about it.

And they understand when I sit down in a line if I must. And if I didn’t have the cane… I would stand, and hurt, and weave from the vertigo and get so tired… and not take that chair because of the visceral judgment we get when we do something but do not appear to be ill. Like people who get accosted when they park in a handicap zone, with the proper card, but do not Look ill. People will forgive any visible sign of illness. But they will not be so forgiving when they cannot see it.

We have the choice and just remember not everyone deserves that information if you expect negative fallback. And it is personal information, you do not need to share it if you are not comfortable. And when you do, remember you cannot know what response you get. You can only control the reaction you have to their response.

Dating

When do you tell someone you are dating? Again this is a personal choice. I prefer to rip the band-aid off and get it over with so I do not waste my time with the wrong person. But you may want to casually fit bits in here and there. Or wait until you know them better. There is no rule for this. It is your comfort level.

Work

You have no legal obligation to say a thing. I tend to mention the migraine due to their impact. But nothing else. But you do not have to mention a thing at all. You just can if you feel you want them to know something specific. Like with fibromyalgia there are limits on lifting, standing, repetitive movements… that sort of deal. I choose a job without those to not have to deal with those issues. However, here sometimes an employer will ask up front if you need accommodations. If they do, you can tell them the accommodations you need to work more effectively. Or you may bring up specific accommodations you will require. I am a firm believer in accommodation to help us function better at work. If we know what helps us, hell, yeah, I would be upfront about it. Like my migraine specs help with photophobia, and I made sure work was fine with them.

But the fact remains the power to reveal and conceal is up to you. If you choose not to talk about it, that is your right. And if you choose to talk about it, that is all cool too. There is no wrong answer. There is just your comfort level.

See more posts:

ILLNESS BELIEF STRUCTURES AND INVISIBLE ILLNESS

INVISIBLE ILLNESS: THE THING THAT HIDES ITSELF

CHRONIC ILLNESS: HOW WE ARE SOCIALLY NOTICEABLE

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2 comments

  1. I wrote something ages ago about disclosing invisible illness, how it’s entirely your decision and you shouldn’t feel pressured into it, nor to not do it just because of embarrassment or fear. It’s a very tricky one, and I think it depends, as you say, on the type of problem (and how that may impact your relationship, such as with cancelled plans), the type of person to tell (are they trustworthy, would they benefit from knowing ie an employer) and situation. It’s a lot to weigh up, and you’ve covered it really well – Excellent post, Nikki.
    Caz xx

    Liked by 1 person

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