May 12th is international ME/CFS, Fibromyalgia, MCS and Lyme disease awareness day. Instead of my usual self-help theme, this post is aimed at spreading awareness of what it’s like to live with such a condition.
This year, as a result of lockdown, there is more potential than ever to help people understand what it is like to live with chronic illness. One of my favourite advocates has been Miranda Hart who has so eloquently shared, live on Facebook, in this wonderful 5 minute video. Chronic illness, especially a more or less invisible one like ME/CFS, is pretty difficult to understand unless you are directly experiencing it, but your understanding is probably the single most powerful thing you can offer to a friend, acquaintance or family member who is unfortunate enough to be experiencing one. Quite often, the suffering caused by the illness is multiplied hugely by the misunderstanding and critical judgement that can be experienced from others.
Although its by no means the same, the stay at home order we’ve been living with for the last few weeks, may give you a basis from which it will be easier to relate.
How much of your everyday life are you missing out on from being stuck at home right now? Have you felt a sense of loss for activities that you haven’t been able to take part in? Imagine not knowing if you’ll ever be able to do any of those things again. Imagine if you were told that lock down was how you had to live, probably for the rest of your life?
Have you been able to just get on with things and make the most of the extra time you have? A lot of people have struggled with feeling fed-up and unmotivated, because before you can really move on and adapt you have to get through a grieving process for the things you can’t do any more. Imagine how much more difficult that grief is going to be if you don’t know if you’ll ever get your old life back again. Then imagine that even if you did feel motivated and wanted to do things with the time you have, you just don’t feel well enough, or experience shows you that when you expend that amount of energy, you feel a lot worse for days or even weeks afterwards.
Then imagine that instead of everybody understanding why you’re at home, as is the case now, people think it’s strange. Because you look healthy to them, they think you’re just faking illness and being lazy.
How much more have you enjoyed going out for your daily exercise or shopping trips knowing it’s the only time you’re allowed out of the house? When we can’t do things because of chronic illness, we can get desperate for more normal activity. Most chronic illnesses involve good days and bad days. On our good days we may go out and do more than we should and suffer for it afterwards. It’s so hard to do the right thing for our health when we’re missing out on so much. The world may only see us on those good days, unlikely to get a glimpse of the payback involved, so once again there is a perception that there isn’t really much wrong with us. Or sometimes a judgement that if we can save enough energy to enjoy ourselves, we should be spending it on something more constructive.
Maybe, if you’ve let yourself grieve how life has changed, you’ve learned to make the most of what is, and have discovered how to appreciate all the little moments of life. You’ve learned new ways to be happy because it’s better than the alternative. Maybe you feel proud of your ability to adapt.
My experience is that people rarely recognise my achievement, instead they just minimise the impact of what I’m adapting to, thinking that if I can be joyful then there mustn’t be anything wrong with me or I can’t be dealing with anything particularly difficult. I don’t want people to focus on ‘poor me’ but I would like it to be acknowledged that I’m doing an amazing job being happy considering my circumstance. And when I have to cancel or say no to something, I want people to recognise that it’s because there are huge limits to what I can do as a result of chronic illness, I’m not spurning anyone or acting on a whim.
Lockdown may have given you a peak of what it’s like to live with limitations but if you’d like to be a better friend, acquaintance or family member to someone living with a chronic illness like ME/CFS I’d love it if you could read some of my older awareness posts. Your belief and understanding are the best things that you can give!
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