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.
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.
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?