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Dealing with any kind of health issue, disability or chronic illness is a very personal experience. Who you tell and how much you disclose about your condition is a decision that only you can make. So who should you tell and under what conditions?
Health Issues Are A Private Matter
The health issues themselves, any surgeries you’ve perhaps had or the specific symptoms you deal with might lead you to feel embarrassed, or you may simply want to keep your private life private. Going from keeping your health condition(s) a relative secret, to suddenly sharing personal details with other people can be incredibly difficult.
It’s okay to feel that way. It’s not easy, and you may decide that you don’t want to tell certain people. Just because someone asks you about your condition as though they’re asking you what your favourite sandwich is, or just because you see others openly share their stories online, doesn’t mean you have to want to share. If you don’t, that’s totally okay.
When You Want To Let Someone In
Living with chronic illness, disability or any other health issue can be a lonely experience and at some point you may want to let someone in by sharing what you’re going through. It’s worth keeping in mind that your experience is uniquely your own. Even individuals with the same condition won’t have the exact same experience you have, but opening up to others in a similar boat may be a good place to start. Here you’ll get a safer degree of acceptance, support and understanding without the judgement. Facebook groups, forums or blogs related to general health support or your particular condition(s) can be great for connecting with others.
It can be nerve-wracking to open up to family, friends, partners and colleagues, especially if you’re not sure where to start or because you can’t guarantee how they’ll react. Think through what you want to say, take a deep breath, and hope for the best outcome. Only tell them about what you’re going through if and when you feel comfortable to do so, and only share as much as you’re happy to. If you don’t want to share everything, that’s absolutely fine. There should be no pressure.
After letting someone in, you may find some weight lifting from your shoulders because it can be exhausting and isolating keeping those experiences to yourself and going through it alone. Hopefully, both you and they will benefit by having someone else in the loop That other person(s) will better understand the situation, will be better able to support you, and will feel closer to you as you’ve trusted them with something so personal. Sharing like this should open up the lines of communication, reduce tension and boost the relationship, while you get someone on your side for your health journey.
Obligatory or Forced Sharing
You may find yourself in a less common but tricky situation where it is, or appears to be, required that you disclose your health story, or at least part of it. This can be the case with employment, particularly when starting with a new employer, if you need adjustments to your working hours or if you find yourself requiring more time off for medical appointments and sick leave. It some instances it seems logical that an employer would want or need to know more information, and it could help further down the line if you’re honest with them about what you’re dealing with. But it’s a two way street. Employers should be impartial and fair, and they shouldn’t discriminate based on health conditions. They also have a responsibility and duty of care for their staff and should, ideally, be willing to make any reasonable adjustments to enable you to carry out your work duties. Sadly, we all know that this isn’t always the case.
How you deal with the issue of being pressured into disclosing your health story or feeling obligated to share the basics will depend on your specific situation. If you feel you can, you may want to ask for an off-the-record chat with a member of HR or a manager you feel you have the most trust in. You should be able to ask that what you discuss is kept in confidence. You can enquire as to how your information will be used and who will see it, if you were to let them know about your health issues. Explain any of the concerns you may have without feeling pressured. Just a casual conversation in the first instance may help you before moving forward more formally. If this isn’t viable, you may want to look at what advice agencies or external resources are available online and locally for guidance. It can help to be informed, aware of your rights and have your ducks lined up in a row before proceeding. For those in the UK, the likes of the Money Advice Service and the Citizen’s Advice Bureau could be helpful starting points.
Feeling Backed Into A Corner
Even if you’re comfortable in talking about your health issues generally, any of us could feel awkward in situations where we are backed into a corner or called out by someone wanting to know personal details. It could be family, friends, a partner, coworkers, strangers. They could feel that you’re holding out on them or that you don’t trust them because you’re not sharing your health issues. They may simply be nosy and feel they have the right to know, when they don’t. You may feel like you’re being personally attacked for why you are the way you are, why you do the things you do because of the health conditions you live with. Whether inadvertent pressure or bullying forcefulness, it can often leave us feeling shamed or embarrassed and like we need to provide some kind of excuse or justification. In the spur of the moment you can feel guilted into disclosing things you didn’t want to.
The fight or flight response can kick in during those moments. If you share when you didn’t want to, you won’t be able to take that back; you could feel resentful or regretful for having felt backed into the corner in the first place, and it’s you that will live with those negative feelings. However, it’s not always a negative outcome. You may just find that sharing releases tension like ripping off the band aid, freeing you from deliberations on the matter. It’s just that ideally you’d want to do this on your own terms.
It’s easier said than done of course, but if someone is pushing you, pressuring you or guilting you, try to recognise that this is their problem, not yours. Take the higher road to see where they’re coming from and empathise if they’re a friend, but calmly state that what you’re going through is personal and private. Explain that you’re not comfortable, at least for now, with sharing it and how that’s no reflection on them.
Give it a little thought. If you genuinely want to share, then do so at your own pace and only share what you’re happy to. If you don’t want to or your gut is telling you it’s not the right time, then stick to your guns because you don’t owe anyone an explanation.
Prepare Yourself For Any Unwanted Responses
While we should go in to sharing hoping for the best, it’s still important to be prepared just in case. Sadly there are instances where the person sharing doesn’t get the response they’d hoped for, and there can be different reasons for this. For instance, a friend or loved one may mean well, but come across as being insulting. A quiet, lacklustre response may suggest that the other person cares, but doesn’t know what to say or is too upset at knowing you’re unwell to come up with something appropriate. An uncomfortable or anxious response may be because that person doesn’t tend to share their feelings and finds discussing deeper issues difficult.
In other cases, hopefully the far more rare of cases, an unwanted response can be borne from ignorance, bitterness, selfishness or spite. If you were to get an unpleasant response, you’re better off without that person or that sort of nastiness in your life, but of course that doesn’t necessarily make being on the receiving end any easier. Another hard response to swallow is if you’ve opened up to someone about something so personal, only to find that they soon after disappear from your life. It happened to me after being backed into a corner to share my health issues and it was a harsh reality to face when I never heard from that supposed “friend” ever again.
A negative response can feel like a personal affront, an attack that’s visceral and cuts deep. We can be left feeling like unwanted responses in any form are a reflection on us and on the health issues we’ve told them about. That’s not the case. If someone can’t handle it, if they’re too ignorant to be compassionate or too selfish to be supportive, then that is on them. It shows their narrow-mindedness and mean heartedness. If they can’t deal well with what you’ve told them, they would never last even a minute in your shoes dealing with all that you do each day. That’s their weakness in stark contrast to your strength.
We would like to hope that we would be treated the way we treat others, but unfortunately that doesn’t always happen. We can only judge for ourselves whether it feels right to share, and if you want to, then go for it. Put a little steel into your spine just in case, but then hope for the best because the likelihood is that the response will be positive and supportive.
Sharing Your Chronic Illness Story : It’s Your Decision To Make
There’s no right or wrong answer here, and nobody can tell you what to do. What you share, who you share it with and how much you disclose is your decision. Do it in your own time and only if or when you feel comfortable to do so.
You might just find that the fear, embarrassment and worry of opening up was all unnecessary when you get a loving, supportive response that makes the risk worth it. Be prepared for any outcome but hope for the best. The initial act of opening up can alleviate some pressure and the weight of needing to hide your illness issues. It can also increase your confidence when you’re assertive and you own your health issues, whether you get direct support from the person you’ve told or not. No matter how those in your life react, please know that there are options and there are other avenues of support to explore. There’s a whole chronic illness community out there that has your back and “gets” what you’re going through, so you’ll never truly be as alone as you may feel.
It’s your health, your body, your choice who you confide in. Own your health with pride. No shame, explanation or embarrassment required.
Caz @ Invisibly Me : https://invisiblyme.com/
Caz
I’m Caz – Blogger, writer, campaigner, tea drinker & over-thinker. I live with a stoma and invisible illnesses, including connective tissue disease, pernicious anaemia, osteopenia and fibromyalgia, making me passionate about raising awareness and understanding of physical and mental conditions. Nice to meet you! I run the blog InvisiblyMe : https://invisiblyme.com
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