Let's face it, being chronically ill is a bit weird isn't it? Add that to the fact that there are so many types of chronic illness, and chronic pain and mental illness, that the majority of people aren't going to have a clue what it might be like for you and your particular brand of weirdness on a day to day basis. You might get bizarre questions or looks that would suggest you've grown three heads and a tail. These make you feel ignored, isolated, lonely, and generally misunderstood. Gaining the support of your friends and family is important to your well being, not just so they can help you with day to day living tasks that you may struggle with, but so you don't feel as alone.
That's where communication comes in, if you want them to know what it's like, you could show them through interpretive dance or a post-modern art installation, but you might not get very far like that. These are a few tips I've picked up along the way that work a whole lot better, and they don't even involve wearing Lycra.
1. Know the facts yourself
You can't explain your condition to someone if you don't properly understand it yourself, sure, havingthe condition makes you an expert on you, but others might need a few more facts thrown at them. You can try official organisations for helpful materials to print off or even the general overview on various large health organisations websites may help.
You can never have too much knowledge, so go load up your brain and become your circle's go-to person on your particular illness. Not only will it help you in explaining things to friends and family but It'll help you in medical appointments if you understand a lot of the background.
2. Tell people at a suitable time, in a suitable way
If you're telling someone for the first time about your condition, when and where is all-important. Try to do it in a natural way rather than sit them down in a we need to talkkind of way - that's just off putting for everyone involved. Don't overload people with all the knowledge you've acquired, but tailor it to the person involved. Let them ask questions, even the really annoying ones, and be patient. Handle this conversation well and it'll make future conversations a lot easier. Remember that you don't need to tell everyone everything, or justify yourself in any way. Only tell people what you feel comfortable in telling them.
3. Be specific
Just like you do in medical appointments, it helps to give people specific examples of how certain symptoms affect you rather than just listing them. A lot of people have heard of 'fatigue' but have no idea what it really means, so give an example of what it means for you. i.e "On a bad day with fatigue, I can't walk around the supermarket" or "I can't cook dinner AND have a shower, so I have to choose." You could even do an over-dramatic arm pit sniff to really hammer home the point! Don't forget to use Spoon Theory if it's relevant to you. If you're talking about pain, it might be useful to say what the pain stops you from doing. Giving these kinds of details helps people to really understand your day to day life, rather than just having this abstract shopping list of symptoms which don't mean much to them.
4. Use online resources
Apart from the already mentioned organisations and charities that might have useful leaflets and the Spoon Theory website, there are also large patient community groups all over the internet. From blogging sites, to Facebook pages and groups, to Twitter. There's something for everyone. These groups are full of people who have been through all the same things as you and can not only point you in the direction of condition specific literature and tips, but can answer your questions on how to deal with friends and family not understanding.
5. Take them to a support group meeting or medical appointment
A great way of letting someone close to you in on your reality is to bring them to a support group meeting or medical appointment. In a support group setting they'll be immersed in your world for only a short while but by meeting others on the same journey as you it'll validate what you've told them and might even persuade them to start advocating and campaigning on your behalf.
If you bring them to a medical appointment they'll see all the frustrations you talk about first hand, and will have a much better understanding of your life.
6. Don't get upset if they don't react the way you'd hoped
So maybe trying to let them into your world backfired and they still say horribly insensitive things or just plain ignore your suffering. The saying "you can lead a horse to water but you can't make it drink" is very true, you can try to explain your situation but if they're just not interested, it's a reflection on them, not you. Some people just don't wantto understand, they don't want to get involved. If that's the case, it's best to walk away and invest your precious time and energy elsewhere.
If it's a very close friend or a family member it can be incredibly hurtful when they don't give you the support you need, but you can't make them be someone they're not. You have to protect yourself first and foremost, so while you may not want to completely cut them off, it might be a good idea to stop flogging that dead horse, especially if it's the one who died of dehydration because it didn't drink the water it was lead to....
Jumbled metaphors aside, do communicate your reality, feelings and needs, but try not to be hurt if it doesn't work out how you'd like. There are LOTS of people online who understand exactly what it's like, you're not alone.
About the Author
Louise Dean is a fast approaching 30 year old from London, UK. She fell ill in 2011 with Lyme and associated diseases, then in 2013 co-founded Lyme Disease UK.
As part of her 'Turning 30 Crisis', she started a new blogging project called Divorced, Diseased & Dangerous with the aim of bringing no nonsense practical tips and a humorously positive outlook to patients.
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The Cowden Support Program
A do-it-yourself Lyme treatment developed by Dr. Lee Cowden, MD