Should you tell others about your illness?

I read this news post this morning.
It’s about a man who was diagnosed with HIV.

Take a moment to think about it.

He also had hemophilia, a disorder that made him bleed and bruise much more than it should.
A home treatment of simple injection of blood was the solution.
But unfortunately that blood was contaminated with the HIV virus.

For years and years this young man wanted to speak about it with his friends and teachers, but his parents advised him not to.

My mum is a diabetic.
Whenever I tell this to anyone, the usual answer I’d get “Yes, overweight people risk that chance”.
While this is true, it’s a very easy judgement.
It’s less common, but my my mum has Diabetes Type 1 which is caused by a malfunctioning in her body, NOT her weight.
FYI, she looks pretty bomb for a woman her age!

It’s never easy telling someone about your disease.
They might make the incorrect judgement.
They might give you a special treatment because they feel  pity for you.
They might even joke about it.

Recently, during a business trip,  I went for a drink with colleagues I usually don’t work with.
One of the girls showed her photographic artwork.
It was nice but also scary and intense.
She was very open about her time of depression and suicidal thoughts and acts.
Everyone listened to her with great respect and understanding.

Later, only me and one other remained.
“You seemed a bit overwhelmed by her story. I’ve heard it before so I have gotten used to it”, he said.
Since he sounded genuinely concerned, I told him I have my mental health struggles.
I explained him a bit about OCD and my obsession with numbers.
He asked questions which made me believe he was interested.

We walked back to the hotel and got into the life.
Then he did something extremely unexpected.
He pressed the buttons with the number I earlier explained that bother me.
He laughed. “Just joking”.

I got out.
“You know what, taking the stairs is probably healthier” I said and dragged myself to the 9th floor.

How do you feel about opening up about your illness to others?

38 thoughts on “Should you tell others about your illness?

  1. This is a tough question. I try and share about my disorders as much as I can, I may not share the depths of how dark certain times were in my life, but i try to be as open as i can. I feel that the more we share then the more others become aware. It is hard to share sometimes though, to know that some out there will twist your disorder into a joking manner or dish out the pity and assumptions…that makes one question whether or not to share.

  2. I understand it!
    I have shared it on my blog quite a bit.
    Sometimes I would get comments like “OCD is not a real mental health issue”.
    It hurts, because they can’t seem to understand how it affects my life.

    Some people are not mature or intelligent enough to understand, sadly 😦

    I think I will have to be come a bit more careful with sharing my story, because I simply can’t take the hurtful comments.

  3. It is difficult and risky, but I’ve realized that I have to do it for me. I recently blogged about finishing group therapy. I was glad that my opening up resonated with a lot of people and they felt it courageous. But, there were a couple who were apologetic, pitying, crying… I’ve learned that it comes with the territory. However, keeping it all bottled in isn’t healthy either, even if sharing means you have to deal with the occasional uncomprehending a**hole.

  4. I think that sharing an illness with someone is less about them and more about you – if hiding it from people takes a toll on your then you should share, if you feel more comfortable keeping it to yourself then do that :O) x

  5. Yeah. I think you just have to careful with who you speak to.
    But then again, this guy seemed sweet and understand and suddenly he isn’t.
    It will always be complicated 😦

  6. At the end of the day you are the ones suffering. People can be pity for you, help you but that’s all they can do. They cannot take away your pain or neither can experience it. So, I feel sharing with your family/close friends is okay but then sharing with someone just like the girl did about her suicidal thoughts and depression with some random people could be a bit unsettling.

  7. I find sharing breeds sharing , which creates dialogue which can be positive if that’s what makes you feel better. That colleague of yours though, maybe it was innocent and he just doesn’t understand it maybe he is an asshole. I would punch him. I’m the face. With that number you hate.

  8. Haha. I should have maybe 😉
    I think it was more a lack of intelligence rather than being intentionally mean. Unfortunately I am not super good in reading people yet.

  9. She was very open, especially because she expressed it in her art work.
    I personally don’t mind it, but for some people it can be triggering.
    It is always a good idea to be careful with whom you share you deepest secrets with.

  10. It depends. I share on my blog, in my books and when I do speaking engagements because I want to help break the stigma of PTSD. But I share only to a certain point. I do believe the more we are open (while still maintaining boundaries) the more people can learn compassion and empathy for others. But its also important to listen to our gut feelings if someone is seeming judgmental or uninterested.

  11. That guy sounds rude; he was sort of picking on her behind her back and then trying to get you rawled up afterwards. I would have taken the stairs too! I talk about MS but I try to present it positively in a way that can help others. Maybe she just needed listeners because some situations in life place us in a spot where we need help. And if she needs help… talking about it can perhaps place her in contact with someone with the answers that she needs OR it may be that she just needs to get it out of her system and having good listeners (with nice/ supportive comments) will help her do that in a way that she can feel cared about which could help her snap out of her funk. Either way… talking about it is good but you need the right linsteners. She should probably change her audience.

  12. Not a good idea I would say. Not many people could get into our shoes and understand the context. Their judgement stems from a news heard, a story read, or other totally unreliable sources. And they even judge you based on your clothes, so can you really trust anyone with such a private info? I think not. Not at all a good idea.

  13. Thank you for your lovely compliment! That’s the aim!

    I agree with you. She was very open and people did listen to her with interested. And there is one that is actually back stabbing her through me.
    That shows low level intelligence.

    Keeping it all inside you is never good, but indeed, the right audience is important. But I guess you never know who is good and isn’t. Unfortunately.

  14. I do agree with you.
    It’s most unfortunate when people mislead you into trusting them.
    So definitely something we have to be careful with!

  15. As you know, I don’t talk about my issues (yeah right). I don’t ever talk about them in real life, just on my blog. I can’t believe somebody would just assume she has type 2 and is overweight! 🙄

  16. People are fast in their judgement. But they just don’t know.

    I find the blog also a safe place to write about my issues! That’s so actually so weird that random stranger understand you better than those that are talking to you.

  17. I’m a private person (no kidding, right?), so I wouldn’t tell just anyone about something major going on with me.
    However, I think it depends on what it was. If it was something that could affect them – then yes, I would give them an FYI.
    I strongly believe in doing what feels right to you. So if you want to share, share. If you don’t, that’s fine with me, too. It’s up to you, not me.
    Today’s culture is different than it was a few decades ago. People “share” a lot more. And not all of them have pure intentions. Some people actually crave the pity, or the fame (Twitter users)(Personal experiences that make me bitter.)

  18. Ha, you private ? 😉
    I’m less private than you. But when I talk about OCD, it’s not very emotional but more informative (believe it or not).
    I’m just stating facts, not so much how it affects me.

    But that are mental illnesses.

    I used to have a colleague who didn’t tell anyone he was a diabetic, because he was ashamed.
    One day he got an attack and I recognized it immediately because I’ve seen it many times with my mum.

    I think awareness should be created and we need to get rid of people feeling ashamed!

  19. I like that you’re informative. I’m sure I don’t understand a lot of stuff about other people’s disorders, but I would love it if they explained it to me. Some people don’t like that. They’re there for an emotional outlet and an emotional response. I would very much prefer your approach.

    You have a good point.

  20. I cannot believe that man did that to you, he didn’t deserve your genuine honesty and openness. Don’t be disheartened though – for every 10 people that don’t understand MH, 1 will and they will be kind, compassionate and restore your faith in us humans. X

  21. What your colleague did with the elevator number was so insensitive and in poor taste. I usually don’t tell people about how my anxiety affects me because I have had experiences where it’s been treated as a thing I can just get over, or people don’t understand how badly it can be an influence on me that it affects how I function and gets in the way of my everyday life.

  22. I feel ya…people accept my physical disorder because they can see it, but when it comes to sharing about my past with depression and suicidal ideation or when it comes to sharing my anxiety…that’s when they have difficulty with being understanding. It’s crazy.

  23. If I try something and it works, I try to share it with people, but I don’t usually open up about my health issues to anyone but family, close friends, and doctors. It would be nice if we could share more, but it usually comes back to bite you.

  24. I understand why you don’t do it. Very few people understand what’s like.
    But honestly, like they never feel anxiety! I challenge them to do a presentation or something. I can easily laugh or be an asshole to them. But good for them, I’m not that kind of sick person.

  25. What a dick! I’m sorry you had to deal with such a person. I always try to hide my fears or annoyances. Like I’ll tell people I’m not ticklish so they don’t try, you know?

  26. Wow well my daughter was diagnosed with juvenile diabetes now known as type 1 when she was 2, she’s now 25. She also has a blood clotting factor called Factor 5 Lieden and then a number of other diseases. I think so doesn’t like to share it with people. So I respect that. I was diagnosed with type 1 when I was 38. My doctor said you can be diagnosed anytime with type one before the age of 40 but it can be misunderstood like you said. I wear an insulin pump and have to admit it really ruins my outfits 😂😂 I’ve leaned how to hide it places so it doesn’t stick out. I love this post. I wasn’t going to comment but you have a great way of drawing people out to share. Such a gift have a beautiful Sunday 🦋💜

  27. I’m so sorry that both you and your daughter suffer from this!
    Since it’s diabetes type 1, I’m quite scared that I will one day have it too!

    With this illness, I do believe it’s important to inform people about it and tell how to act if there the sugar level drops.
    But no, you don’t have to tell everyone everything about it if you don’t feel comfortable 🙂

    Thanks for sharing your story! It’s very appreciated 🙂

  28. Hey Andrea!

    I think that sharing our anxieties, weakness and struggles with the world is good thing. I’m not saying we should yell it out with whomever we meet. But once we meet someone and get into a more deeper talk, then why not.

    Many people are afraid of opening themselves up. The reality is, many wish they could, but they are too afraid of being judged. Once we are the one who makes the first step, I think we can build much more rapport with the other person.

    We can begin to practice more empathy and live a much more unmasked life!

    Nice article! Keep it up! 🙂

  29. Thank you for your support!
    I agree, it can help to get things of your chest. It’s part of raising awareness and maybe one day everyone will understand a bit more of it. 🙂

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