Home General Info & Awareness Who Should You Tell About Your Chronic Illness?

Who Should You Tell About Your Chronic Illness?

by InvisiblyMe
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Dealing with chronic illness is a very personal experience. Who you tell and how much you disclose is a decision only you can make, but who should you tell about your health issues and under what circumstances? 

Chronic Illness : A Private Matter 

The illness itself, surgeries you’ve had to have or the symptoms you deal with may leave you feeling embarrassed, or you may just want to keep your private life private. It can be incredibly difficult to go from having kept what you’re going through a relative secret, to suddenly sharing such personal details with others.

It’s okay to feel that way. Just because others are sharing their stories online or just because someone is asking you to tell them all about your condition as though they’re asking what you’re having for dinner that night, doesn’t mean you have to want to share. If you don’t, that’s okay

When You Want To Let Someone In

Living with chronic illness can be a lonely experience and it might be the case that you want to let someone in and confide in what you’re going through. It’s worth keeping in mind that your experience is uniquely your own. Even those with the same condition won’t have the same experience you have, but sharing what you’re going through with others in a similar boat may be a good place to start. Here you’ll get some degree of understanding, acceptance and support without the judgement. Facebook groups or blogs are good places to start. 

When it comes to friends, family, partners or colleagues, it can be nerve-wracking opening up because you’re not sure of the response or you don’t know where to start. Take a deep breath and hope for the best, but only when you’re comfortable in doing so and only share as much as you are happy to. You don’t have to feel the need to share everything if you don’t want to. 

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You may just find that letting someone in eases a little weight off your shoulders because keeping your experiences to yourself can become exhausting and isolating. Hopefully by including others in what you’re going through will help you and them. They’ll be more aware of the situation and more understanding, and they’ll feel closer to you for your desire to share something so personal with them. It will hopefully open up the lines of communication and free up a little tension, meaning you’ve got someone else by your side during your journey.

The Case Of Obligatory Sharing

In some rare situations, it may be, or seem to be, required that you disclose your health story. This is often the case within employment, perhaps when applying for a new role or when having to take time off on sick leave. If your condition may affect your role or your work in any way, this is logical and it may help further down the line to be honest in what you’re dealing with. Employers should be fair and not discriminate based on health conditions. They also have a duty of care towards their staff and should be willing to make reasonable adjustments where possible. Sadly this isn’t always the case. 

If you’re apprehensive about disclosing your condition(s), it might be worth asking for an open, off the record chat with a manager you have the most trust in or a member of HR. You can speak in hypotheticals and ask for what you say to be held in confidence. Ask how your information will be used and who will see it. Explain any concerns you may have. Don’t feel rushed or pressured, just have a conversation in the first instance and make sure you’re comfortable with the situation before moving forward. If this isn’t possible, see what external resources and advice agencies are available to get some guidance; brush up on your rights and get your ducks in a row first. If you’re in the UK, the Money Advice Service’s section on disability and chronic illness might be a good starting point.

Feeling Backed Into A Corner

There are unfortunately times where others might back us into a corner and call us out, wanting to know our personal details because they feel they have a right to know. This could happen in the case of family or friends, for instance where the other person feels you’re holding out on them or don’t trust them. Alternatively, you may feel attacked for why you are the way you are or why you do the things you do, and that you need to provide some kind of reason, ‘excuse’ or justification. You might feel pressured or guilted into revealing things you didn’t want to reveal to that person or persons. 

Under these circumstances, fight or flight might kick in. The problem here is that you can’t take back what you share, and there’s always a risk you’ll regret it once you’ve said it because you never wanted to share it in the first place. 

It’s easier said than done, but realise that someone doing this to you is their problem, not yours. Empathise with where they’re coming from and try to calmly state that this is personal and private. Explain that you’re not comfortable with sharing it but that it’s not any reflection on that person. Give it some thought; if you feel you genuinely wish to share, then do so in your own time. If you don’t, then stick to with your gut because you don’t owe anyone an explanation. 

Prepare For Unwanted Responses

Sadly the response you get from another person when sharing what could be some very emotional, private information may not be what you’d hope for. There could be many reasons for this, from someone meaning well but not knowing what’s best to say, to the other person simply being ignorant. In the case of ignorance, you are better off without that in your life anyway, but that doesn’t make it any easier to deal with. In some cases, the other person may respond well but then disappear from your life, which is just as painful. 

While you may hope to be treated as you would treat others, that doesn’t always happen, but it says nothing about you and it’ll have nothing to do with your health condition, it’ll only say something about that other person. Imagine if they can’t deal well with what you’re telling them, then they’d never last a minute in your shoes dealing with what you do each day.

Hopefully the response will be neutral or positive, but it’s worth putting a little steel in your spine just in case because a negative response can be like a kick in the gut and a slap in the face at the same time, and it’s painful to deal with. 

Sharing Your Chronic Illness Issues : It’s Your Decision

What you share and how much you share is your decision. Do it in your own time and only if you feel comfortable in doing so. Sometimes the risk of putting yourself out there is worth it, but be prepared for any eventuality and outcome. No matter how the people in your life react, which will hopefully be very positive and supportive, there will always be those in the chronic illness community that ‘get’ what you’re going through, so you’re never as alone as you may feel in this journey. 

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Have you found opening up to others has been beneficial? Or have you ever felt backed into a corner and wished you’d never disclosed information on your health condition afterwards?

Caz  ♥

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46 comments

Kymber August 3, 2021 - 4:20 pm

Thank you for writing this, Caz. I often find myself in situations where I don’t feel comfortable sharing but feel I must. A lot of people don’t understand different disabilities. But I like the things you said here. xo

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InvisiblyMe August 6, 2021 - 3:36 pm

I’m sorry you’ve been put in those sorts of situations, too. It’s very uncomfortable, isn’t it? ???? It’s hard, too, to remember at the time that we have every right to decline, no matter how pressured we may feel for whatever reason, whether intentional by that person asking us or not. It’s only after we’ve shared that we look back on it feeling angry with ourselves for having said something, but that sort of position is not an easy one to be in. As you say, many people don’t understand different conditions and that doesn’t help matters. But no matter what, you have a friend in me, Kymber, and a whole chronic illness & disability community who are right behind you, on your side always. xx

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B August 3, 2021 - 4:21 pm

People close to me and at times total strangers bs they are as a rule objective and emphatic. Never the boss. I mean, I never could.

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InvisiblyMe August 6, 2021 - 4:22 pm

I get where you’re coming from. I hated – absolutely hated – the idea of having to tell anyone at work, even the HR woman who was in another branch, anything about what surgery I had and what my health issues were, except eventually I got forced into it with little choice (they let me go anyway so I shouldn’t have bothered caving!) xx

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Ashley L. Peterson August 3, 2021 - 4:45 pm

I decided early on in my illness to go with radical openness. I was backed into a corner in terms of work, and I figured if I couldn’t control not telling, I could control telling it my way. It can also help cut down on some of the gossip, as there’s less to speculate about if people know the real story. There have been times when people reacted negatively, but I’ve never regretted my decision.

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InvisiblyMe August 6, 2021 - 4:49 pm

That’s an interesting approach to go for, and one I can definitely see the benefit of. I wanted more openness with my blog and I felt a weight lift in doing so because you get it all out there in the open. With those in your life, as you say you’re then making sure they get the real story, not gossip or their own assumptions. I’m sorry you were backed into a corner when it came to employment as I found I was eventually too. That’s not cool. I’m glad that going for openness has been, on the whole, a positive.

I think there’ll always be people who respond negatively for whatever their reasons may be, but that’s just it – it’s down to their reasons and their own problems. I wish I had the guts to ‘come out’ more about my situation but alas, my guts were previously taken away in surgery and so I might never have the confidence to go all the way ???? Thanks for sharing your experience on this topic, Ashley. xx

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Sandee August 3, 2021 - 5:52 pm

I think each person has their own idea about who to tell and who not to tell. An individual choice.

I’ve enjoyed reading about your issues with chronic illness. I’ve learned so much from you. Thank you for that.

Have a fabulous day, Caz. Big hug. ♥

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InvisiblyMe August 6, 2021 - 4:50 pm

And thank you for reading and leaving such compassionate comments, Sandee. I totally agree – it’s a personal choice, there’s no right or wrong and nobody should feel pushed into disclosing anything if they’re not comfortable in doing so. Have yourself a lovely weekend ahead! xx

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Smelly Socks and Garden Peas August 3, 2021 - 7:48 pm

Awesome post Caz. I have a colleague with health issues and I can just read her experiences with other colleagues in what you write. It’s crappy that people can be so nosy and judgemental.

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InvisiblyMe August 6, 2021 - 6:22 pm

I’m sorry for your colleague. You’re right, it’s crappy when others can be quite pushy in assuming, or expecting, you to disclose something you clearly don’t wish to discuss, and the judgement can leave a very bitter aftertaste for a long time. xx

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Sam August 3, 2021 - 9:38 pm

This is a brilliant post Caz. It will be so helpful to so many. I’ll be sharing it for sure xx

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InvisiblyMe August 6, 2021 - 10:40 pm

I’m glad you like it, Sam – thank you for sharing! ???? xx

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capost2k August 3, 2021 - 10:02 pm

“Wisdom rests in the heart of a [person] of understanding,
but it makes itself known even in the midst of fools.” Proverbs 14:33
Thanx for a wonderful blog!

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InvisiblyMe August 8, 2021 - 4:20 pm

That’s an interesting one! Thanks for sharing and I’m glad you like the post ????

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Lucy August 4, 2021 - 10:36 am

Thank you for sharing this post Caz. I really needed the reminder that other people’s reaction to what I share is a reflection of them and not me. No matter how hard I try I never seem to have the right words to help people understand just what having a chronic illness is like. I always feel less understood after opening up than before. It can be so lonely but recently finding this community with other people in similar situations to me has been so helpful 🙂 I hope you’re holding up ok. Lucy xx

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InvisiblyMe August 8, 2021 - 5:00 pm

Thank you for the comment, Lucy. I’m sorry you find it hard to adequately explain to others, too. It’s really not easy, and I think once I realised that actually nobody will fully understand it unless they’ve experienced it themselves, I stopped worrying too much. But there will always be some people who try to understand and who empathise, and those that just don’t. But yes, it’s a reflection on them and not you, and you will always have a chronic illness community here that gets you and is behind you 100%. I’m always around if ever you want to talk, too ???????????????? xx

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Hope found in M.E. August 4, 2021 - 12:25 pm

So true, Caz. As you may know, I had my life emblazoned across local media recently. Relating to the local wildlife issues I’m pursuing. This was initiated by extended family, but I hadn’t wanted a pity party. (They often go the ‘pity party or ‘we don’t believe you routes’).

But that is how some of it was conveyed. It wiped me out. Thankfully the journalist was lovely, so I didn’t mind too much. I received online abuse as a result of the articles from a stranger & from family after asking to please to stop overloading me. So many just choose not to understand, that is exhausting in itself. Onward & upwards, hopefully. Xxx

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InvisiblyMe August 8, 2021 - 5:05 pm

Oh Penny, I’m sorry. That is awful, and you shouldn’t have to deal with that. I’m angry just reading your comment! Yes, there will always be people out there too ignorant, self-absorbed or just moronic, and those that prefer to cut others down in order to make themselves feel better. What better way than trolling and writing online messages, because they’re pathetic. I’m sorry you’ve had unpleasant responses from family as well, that must have hurt. It’s all the more angering when this happens to someone you know is so compassionate and would never dream of treating someone else the way they’ve been treated.

I hope you know that any and all such responses are a reflection of them, and not of you. Your chronic illness community here has your back, always. Onwards and upwards not hopefully, but definitely ???????? xxxxx

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Holly August 4, 2021 - 2:33 pm

I love that you are opening up a conversation on such a tough subject matter, Caz. You are the perfect person to do it! Your empathy, wisdom, and understanding is vitally needed.

One of the things that stuck out to me was when you mentioned reaching out to people who can actually empathize with what you’re going through because they understand on a personal level. (i.e. Facebook Groups, other bloggers, etc). The online world has worked wonders for people who once felt isolated and misunderstood in how they feel!

Your point about employee discrimination is also very valid, sadly. It is very disheartening to be stuck working in a job that clearly does not care about the individual needs of their people. A nurturing environment at the workplace has become increasingly rare. (sigh) I love that you’ve caused people to think about what their options may be as well. Many people may not have even considered that help is available!

I love that you are giving people a voice here, Caz. It’s true – some people honestly feel they have the right to know about your business. They don’t. Anyone who does not respect your boundaries doesn’t respect you. And if they don’t respect you – then, they probably don’t need space in your life. Your business is your business. Your point was perfectly stated – if you choose to share personal details, great. If you choose not to, anyone’s reaction to your denial of their request is their problem – not yours.

Beautiful post, my friend. I admire you for sharing with such honesty. You are helping people feel far less alone in their day to day chronic illness lives. ♥

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InvisiblyMe August 8, 2021 - 10:32 pm

That is such a kind thing to say – thank you, Holly! ????

I absolutely agree on the online world because it connects those people who need it, cultivating communities like the chronic illness one, to give people a place to feel they belong, to keep them going, inspire them, motivate them and so on. It’s priceless.

Employment is a tricky one, isn’t it? Some managers and companies are great, some not so much. I thought mine were okay, but I didn’t like when I got forced into disclosing what was wrong with me, only for them to let me go a short while later anyway. Grr. It’s different if you stay within that company and feel awkward, or get treated differently, because of something you’ve disclosed. It could of course be really beneficial, but it may not, and it’ll vary depending on the situation. Seeing what your options are and not feeling rushed either way is a good idea.

I love that – “anyone who does not respect your boundaries doesn’t respect you”, in which case they don’t need to occupy space in your life and they’re not worth your anguish and heartache.

Thank you very much for this incredible comment, Holly. I’m really glad you liked the post! ???? xx

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James Viscosi August 4, 2021 - 4:43 pm

When I was getting ready to post the series on my blog about my ruptured cerebral aneurysm back in 2019, my wife mentioned a concern that future employers might Google me and find it and be reluctant to hire me. I decided to go ahead and post it anyway in the interest of educating people, but it was definitely a consideration and gave me a bit of pause!

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InvisiblyMe August 8, 2021 - 10:36 pm

A very good point. I have a feeling that if you were to have decided against posting, you would have probably felt regretful or resentful for it. It’s not nice feeling we have to censor ourselves for a reason like this, and yet it’s a valid point of concern. For what it’s worth, I’m glad you decided to blog about your aneurysm because the outcomes of that are priceless. If only employers could see that actually many people with illnesses and disabilities, or who’ve had conditions in the past, are often all the stronger, kinder, more dedicated and more freaking awesome in general as a result. of what they’ve been through xx

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Sandy August 4, 2021 - 6:03 pm

Caz – Lots of good stuff here!

I’m so glad that you also addressed the issue of employment. Even though many of us would like to keep it private, it’s important that employers understand so that appropriate accommodations can be made.

One of the other issues I think about is that because my condition is rare and most people have never heard of it, I feel like my efforts at a brief description of what it is and how it effects me just falls sort of flat. It’s so very hard for people who aren’t chronically ill to understand what it’s really like, and so I tend to just avoid the conversation.

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InvisiblyMe August 8, 2021 - 11:34 pm

Thanks very much for reading & commenting, Sandy, I really appreciate it. The employment side of things is tricky because in theory – while it doesn’t always happen – at least letting on to what’s happening with your health if it could impact your work should be helpful so your employer can offer any workarounds or offer support where required. If a condition didn’t affect your job, or if you didn’t think there was anything your employer could do to better accommodate you, maybe it’d feel a bit different because there’s less benefit to disclosing in that case.

I tend to go for vagueness and avoiding such conversations where I think it’s going to be a lot of effort or rather pointless, too. As you say, especially if it’s a condition not that well known, others won’t really get it unless they’ve experienced it themselves. That said, some nearest and dearest may want to feel you can confide in them, they’ll want to try to understand as best they can and they’ll do whatever they can to support you. I suppose it’s a case of picking your battles wisely and remembering that you owe nobody an explanation so you should never feel pushed into talking about things you don’t want to. Great comment! xx

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Ann Coleman August 4, 2021 - 8:49 pm

i absolutely agree! What you share about your illness, chronic or not, is your personal decision. Just because someone asks doesn’t mean you have to answer.

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InvisiblyMe August 9, 2021 - 10:45 am

Absolutely, Ann. Someone can ask, but that doesn’t mean they have a right to know. It’s an unpleasant position to be put in, so I hope more people can feel they’re well within their rights to not disclose things they don’t feel comfortable sharing. Thanks for reading & commenting ????

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Despite Pain August 5, 2021 - 10:06 am

Excellent post, Caz.
Sharing about our health is one of the most personal decisions we make. I choose to be open and share (probably too much at times) in the hope of it bringing awareness and maybe helping other people feel less alone with similar problems. But I understand that not everyone feels that they can do that. That’s why private support groups are so good. They can talk freely without worrying about people not really understanding.
Sharing in the workplace should work better than it does. It should mean that employers try to help, but we all know that it doesn’t always work like that.

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InvisiblyMe August 9, 2021 - 10:49 am

Thank you for sharing your feelings and approach to the issue, Liz. I think openness can come with some big benefits, namely the weight off your shoulders for doing it once it’s all out in the open and how it can help others at the same time. I think we also tend to anticipate how someone will react before we consider sharing with them because we want to avoid awkward situations or feeling judged. It’s not always easy, that’s for sure. As for employment, I agree, disclosure should be beneficial so the employer can make reasonable adjustments and to take a little pressure of that individual, and yet that sadly doesn’t always work as it should. xx

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Blanca August 5, 2021 - 10:10 am

Hi Caz, you make really interesting points in this post. Many chronic illnesses are invisible from the outside and people don´t understand what´s happening to you. I suffer from Hashimoto´s thyroiditis, also a chronic disease. Most times, not sharing with the ouside world and suffering silently seems the only way out. But sharing with other people who suffer from similar chronic illnesses really helps because they can empathise with you, understand what you´re going through and you don´t feel so alone.

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InvisiblyMe August 9, 2021 - 10:54 am

Thank you for the great comment! Invisible conditions, like you experience with Hashimoto’s, add another difficult dimension to the mix for sure. Many conditions aren’t visible from the outside, at least not in any obvious ways, and over time it can be a very, very isolating and frustrating experience when nobody knows how much you’re struggling. I totally agree with sharing with those with their own conditions – the chronic illness community is fantastic and you know you’ll never be truly alone, that there will always be people who ‘get’ it and who have your back no matter what. And that includes you, Blanca ????????

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Lisa August 6, 2021 - 1:18 am

I so loved this blog. This is all new to me

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InvisiblyMe August 9, 2021 - 10:55 am

Thanks, Lisa, I’m glad you like it! ???? x

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Lindsay August 6, 2021 - 4:37 am

This is a brilliant post, Caz. It’s an individual choice. I share as little as possible with my boss. She knows I have a chronic illness, but that’s about it. I occasionally share on social media, but I’ll go through phases where I post about it regularly, and phases where I don’t discuss it at all for long periods of time.

One of the few things we have control over with chronic illness is when and where to share our story. No one should be able to take that from us.

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InvisiblyMe August 9, 2021 - 1:09 pm

A very good point and I agree – with so little control when living with chronic illness, at least what we disclose should be within our control and nobody should be able to take that away from us. I’m really glad you like the post & thank you for sharing your experience, Linds ???? xx

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terrepruitt August 7, 2021 - 12:30 am

This is a huge issue now that some people cannot be vaccinated and will now have to defend themselves and explain it is because of an illness. Unfortunately it seems there really is no such thing as privacy any more.

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InvisiblyMe August 9, 2021 - 1:57 pm

A very good point, Terre. I thought the same when mask exemption became an issue, and again now with people who probably very much want a vaccination but who can’t or choose not to have it because of health conditions putting them at risk with such a vaccine. There is an element of judgement that puts pressure on people to have to explain or defend themselves and that does wear away at a person’s personal right to privacy quite dramatically. x

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Samantha August 7, 2021 - 9:01 pm

I once ended up in a situation where I had to tell my boss I was seeing a psychologist for being depressed. I remember being really nervous about it, but she sort of got nervous for having pried it out of me, then immediately shut down the conversation and gave me all the time I needed off without asking any more questions… Weird, but functional, I suppose. And I had to tell two professors in college, as I was in the process of writing my bachelor thesis when I broke down. Their responses were actually very kind and understanding, much to my surprise.

But depression, even if it lasted for many years, is still different from having a chronic illness. Everyone has the right to tell or not tell anyone else about it. It’s you life, your body, your illness, your choice. Just make sure you tell SOMEONE, because you shouldn’t walk around with the added pressure of having to deal with your illness alone.

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InvisiblyMe August 11, 2021 - 5:01 pm

It does sound like your boss was quite abrupt in dealing with what you were telling him but at the same time, he did the right thing with giving you the time off you needed. It’s great your professors in college were understanding. People can surprise you for the better sometimes, and it’s always heartening to hear when this happens. It’s a risk, but it’s worth taking.

While chronic illness of a physical kind entails its own challenges compared to mental health, the two have plenty of overlap. I absolutely agree on the right to tell others or not to tell others, but yes, it’s a heavy weight to carry on your own. I’ve felt relief for ‘coming out’ about certain health problems, a huge amount of trepidation for talking about my mental health and depression, yet a similar sort of relief at the same time. Such things are hard to deal with as it is, let alone feeling like you’re on your own for the duration. Thanks for sharing your experience lovely ???? xx

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da-AL August 7, 2021 - 10:27 pm

this post has definitely struck a nerve, & not just with me — I’m not chronically ill, but we all need to remember that it’s ok to decide what we tell people & what we don’t — just cuz someone asks doesn’t mean we have to answer…

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InvisiblyMe August 11, 2021 - 5:04 pm

Absolutely, da-AL. This whole thing could apply to a myriad of things in life, including things we may have experienced. We may want to talk to someone else and let them in. We may not. The way we feel about it and disclosing such things may change over time. Nobody should feel pressured either way, and nobody else is entitled to know all about it simply because they’ve asked you and feel they have a right to know, because they don’t. xx

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Mrs. Ram’s Jams August 8, 2021 - 2:24 am

???? ???? ????

Say it louder for the people in the back.

I choose to share most of what’s going on in my invisible illness journey, but that’s just me doing me. And I love to make people uncomfortable by talking about bloody poo in public. ???? But again, that’s just me doing me.

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InvisiblyMe August 11, 2021 - 5:20 pm

Keep doing you & making others uncomfortable ???? Poop is such a hard one to talk about in our society & it’s dangerous because people can be very poorly and very alone dealing with related conditions, being too embarrassed to tell anyone. I spent years keeping it a secret, and it’s not easy. You rock – I love the attitude! xx

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ellenbest24 August 9, 2021 - 11:39 am

I have a friend I can tell anything to … but even she sometimes comes out with nuggets like “IF you push yourself a bit more, isn’t exhaustion and fatigue another name for lazy? Well you look fine.” These comments are but a few, from someone who knows, disheartening is not even close to how it makes me feel. So, ‘I am fine it’s all the others’ Is my go to quip, it is just easier.

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InvisiblyMe August 11, 2021 - 5:30 pm

Oh Ellen, I’m so sorry. I was hoping you were going to say you could talk to this friend & feel supported, but I wouldn’t be inclined to tell that person anything if they came out with stuff like that. It’s insulting and infuriating and disheartening in equal measure, isn’t it? I understand that people won’t ‘get’ it unless they’ve been through what you have, but you can try to understand and empathise, or at least not make that person feel even worse by mentioning things like how you look fine or questioning whether you’re just lazy. Have you ever talked to this person about how such comments aren’t helpful and are actually quite hurtful? If I were in your shoes, I don’t quite know what I’d do either. Please know that you have a whole community on here that’s gets it, that has your back and will always be behind you. I’m always around if ever you want to talk, too. I certainly won’t be coming out with any such comments, that’s for sure! xx

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Em James August 12, 2021 - 10:34 pm

I think it’s individual choice as well and the situation depends on who you’re talking to. Like you said with it being different for work or family, or sometimes you just know someone may not understand at all. I have been put in a bad place before with someone pressuring me and I also ended up really regretting telling them anything. Trying to be assertive when that happens isn’t easy unless you’re already quite confident, but practice makes perfect when telling someone it’s none of their business!

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SS January 6, 2022 - 3:20 pm

I enjoyed reading this and sometimes you would think with the amount of times I’ve shared, it would get routine but it doesn’t. Still people either forget I’ve shared specifics or they feel I am exaggerating and don’t comprehend how excruciating a lot of things are for me. I tend to eventually give the basics to a select few and then possibly elaborate more down the line but to have to keep explaining the same thing, makes me want to scream!!!

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