Before we get into today’s blog post I just want to say I mean no disrespect to anyone who genuinely tries to be supportive of someone with M.E/CFS, I also know a one-off comment can be a blow to someone that hurts and can stick in their minds.
Sometimes no matter how open you are, family and friends just don’t seem to get the impact M.E/CFS can have on your life, whether you are lightly affected or moderately affected edging towards severely affected. I have some experience in this, and at that moment it can be really hurtful to not feel like your illness is considered. Or maybe not believed or as if you have used hyperbole about how it affects you. I always try to remind myself that unless you live under the same roof for a few weeks you can probably ‘fake’ being well for a few hours or days. You can hold yourself together and end up in a mess once the door shuts and you’re with people who you trust.
These are my tips for dealing with people who might not want to face it because it’s bleak.
1. If you can, try to get them to watch Unrest. In my opinion, it helps to see it visually and if it’s not in front of you it might be easier for them to absorb the information and then see what happens when they aren’t there. You can order it off Amazon iTunes and it’s on Netflix. Give it a go.
2. Gently remind them if they are expecting you to do something you can’t do or cope with. You don’t need to apologise and explain why just say I can’t do that. Explain if you think it will help but if not save your energy.
3. Take a breather if you find yourself getting angry/annoyed. It can feel infuriating especially if they are doing something that hurts you like noise sensitivities or bright lights. It isn’t bad to go rest away from it all and collect yourself, or just ask for an adjustment and remind them why that hurts.
4. Accept they might not ever fully understand. It’s tougher than it looks because they are part of your lives but you have to accept that people tend to stick their heads in the sand if it’s too much to deal with.
4.5 If they don’t see you often even if others have given them updates they might not know that you’ve had a relapse/crash or remember what is an issue for you.
5. Try to make sure they are in the loop before you see them, you can delegate that to someone else to do but try to make sure they know what has gone on with you since the last time they saw you before you see them.
6. Remember you don’t have to share all your medical history if you don’t want to. Gloss over each appointment but share what you feel comfortable with.No one is entitled to know anything which is something most people feel obliged to share because questions were asked, almost to justify it.
7. Try to not murder them when they ask “Any signs of improvement?” or “You must be closer to recovery by now?” or “What are the medical team treating you with?” It is their way in including you in conversation when they have no idea what else they can talk to you about. If like me you are out of education and out of work the questions after this are socially seen as rude so they tend not to go further than “What are you doing with your time these days?” If you have ever seen Madagascar the penguin’s slogan of “Smile and wave boys, smile and wave” are your go-to response. Be polite, give nothing away.
Lastly I just want to say that you don’t need to force someone to beleive you, if they are that intent on being an ostritch (head in the sand) let them. It says more about them that it does about you. You have to rememeber its on them and how they feel rather than it’s about you. It’s really tough and can feel like a impossible thing to accept but I wouldn’t hurt yourself in the process of trying to get them out of the sand.
I hope these tips are helpful. Comment down below with your horror stories or your advice I’d love to hear from you!