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By Beth Dillon
Socialising is a minefield for all young people; but as set out in our first post, its particularly tricky with a chronic illness or disability. However, with chronic illness and disability other challenges present themselves. For instance, for some people looking at bright screens may be difficult however friendship ‘group chats’, planning and networking all now seems to happen on technology. Hence here are some tips for those living with health conditions. I can’t say that I always follow this advice because it is difficult to however life is a lot easier if you do!
Try not to compare yourself to others. This is simultaneously the most important and the hardest tip. It’s ok to say no. Its ok to be tired or sore or unable to do something because of your health. It feels rubbish when you see everyone else being able to do whatever they like and even worse when it’s been something you’ve been looking forward to. It can feel like you’re a failure for not managing to make coffee with a friend (absolutely ridiculous but also out of your control). You can feel like you’re not doing things ‘right’ like everyone else is doing far more than you. Rationally this is all rubbish, everyone is not doing nearly as much as you think, anything can be rearranged and most importantly nothing is unfixable. For fear of angering anyone – pacing is key ( I could do with this advice!), you do things at your own pace in the way that suits you. Ass
ess the value of things, whether it’s something you REALLY want to do, check in with your body. Everybody is different, so you do you. No one is going to think any less of you- to say no is admirable and sometimes the hardest thing of all.
Connect with people in similar situations – like I said above, don’t compare yourself others however that is far easier said than done. Something that really helps with this is connecting with other in similar situations who are experiencing similar problems. Chronic conditions can sometimes make you feel lonely, as if no one quite understands and you can sometimes feel like a bit of an ‘oddity’ and embarrassed about your issues. Connecting with others provides people who can share tips and tricks and simultaneously you can do the same. Entering a community makes you feel a lot less alone and helps you realise that your struggles are nothing to be embarrassed about. In such community’s health problems are the norm rather than the exception and you rarely need explain anything. This can all help you to deal with day to day life and normal socialising.
Don’t shut yourself away- when you feel rubbish it’s so easy and desirable to hide away, not leave your room and go out. In your head you can overthink everything, everything that can go wrong, and the implications of this. Often this is completely irrational and by hiding away it’s so easy to spiral. With physical and mental health being so intrinsically linked hiding away is good for neither. Often you just need to take the first step with socialising, say yes instead of no to that coffee offer, reach out to a friend and suggest a short trip. Don’t get me wrong, sometimes time shut away is what you need however time outside, with company can drastically change your perspective and get rid of some of the worries that come with socialising.
Try being open about things – coming from the person who hid all medical issues for 14 years this may seem a bit rich coming from me however once you open up life becomes so much easier and more enjoyable. I always do my friends and the people around me a complete disservice, not wanting to ‘trouble’ them with my problems and thinking that they would be completely unwilling to do the things they do to help. A six-week stint in the QEUH and the vast quantity of visitors, offers of help proved me completely wrong. I have found that often people just want to understand and once they understand they are a huge assistance and any friendships become far easier. It’s hard to take the first step but it is so worth being open with people.
Be light-hearted. Things don’t always go right. Sometimes you want to crawl into a hole over a public incident however often the best way of dealing with these things is to laugh about it, make a joke, be polite. It helps you feel better about it and others seeing your reaction sometimes feels like you ‘ giving them permission’ to also laugh about it. This creates an upwards cycle and health and disability become far less of a taboo and a big deal. This has a spiral effect leading you to do things you may not usually do for fear of consequences or embarrassment – a rapid increase in confidence. I guess I’m only speaking from my experience, but I feel having a culture of laughter is always far better for all than a serious atmosphere!
Be prepared but not too prepared. It helps to be prepared. If you know that you struggle with something have a think about what you can do about it. For instance, in all day HIVE ( the uni nightclub and it’s as bad as it sounds!) one of our friends was very migraine-y and not very well. However, another friend made sure to bring small snacks to make sure that they ate, and the situation didn’t deteriorate. Equally our friend made sure to bring medication for when the other dose would wear off. These are small steps. In terms of accessibility sometimes it pays off to have a think about the most accessible, least exhausting routes or ways of doing things so you could go these ways. This is a simple thought preparation, but it can pay off. However, whilst it is important to be prepared nothing quite beats being spontaneous, that feeling of just DOING something without thinking about your health. And whilst this may not be the most beneficial for your physical health it can improve your mental health and outlook no end. I guess the take home message is be prepared to be unprepared – build up a little library of tricks that can be accessed quickly at any point.
These are just what I have found works for me, but I would love to hear your tips and tricks!
(Originally published 13/0/21)