It’s ME awareness day. So I feel the need to write a blog post… or at least, I want to do so.
Trouble is, it is hard to know what to say. When I first started struggling with chronic fatigue in my teens, I really didn’t want to talk about it. Partly from self-consciousness, partly because I didn’t want to be identified by it, partly because I didn’t really have any words to say. All the available ones seemed limp and inadequate. Perhaps if I had found a way of explaining things, I would have found more understanding in my contemporaries.
It’s not that they were directly unkind, but I could sense bafflement: “I don’t think I could stay home just because I was tired.” At one point a group of my friends actually counted how many days I’d been off school, and were giggling about it. They didn’t say it directly. But I knew exactly what they were talking about. It didn’t help me open up to them; it just made me keep my silence. People started off being sensitive. But as the weeks and months went by, I got the impression they felt I should be better by now.
After a while, when you have an illness which means you ‘disappear’, the gap you left starts to close. You’re no longer even registered as missing.
One of the catchphrases of ME awareness this year is ‘Can you see ME now?’. You may have heard of the #MillionsMissing campaign, whereby those who cannot be present to campaign for awareness and research funding are represented by an empty pair of shoes… the missing.
It is relationships that suffer. Friendships that wilt under the strain of absence. People invite you to things, you can’t come. Eventually they stop inviting you.
Can I suggest something? If you have a friend with an illness that means they can’t often be present, don’t stop inviting them. Maybe this is just my opinion, but to know you are still invited means you are still remembered, still considered, still loved. You can always say “I realise you may not be able to make it, but I wanted you to know you would be so welcome.” In an age of social media this is even more acute. When someone is afflicted by an illness that pins them to their house, their room, in some cases their bed, seeing on Facebook their close friends doing things they didn’t even know about, let alone were invited to, can add an additional layer of grief.
Yes, there is grief in being the missing.
That’s not to say you shouldn’t post your fun pics on social media! But perhaps include the person in other ways, send a hello message or funny photo especially for them. Invite them in the first place, even if they cannot come and you know that.
Maybe others with chronic illness disagree with this, but this is my experience. I’d rather be invited, I’d rather be remembered. I would still be sad if I can’t make it, but I would feel acknowledged, loved. Having people assume I can’t be there is tough. I don’t know if that’s the case, or if they genuinely don’t want me there. Perhaps inviting me never occurred to them.
I say this as someone who swings between mild to moderate ME. Sometimes I can come; there are plenty of invitations I can accept and have accepted! But memories of times when I have had to withdraw completely sting and create fear for the future. Will the friendships hold?
Can you see ME now? If nothing else, remember ME.
For those with severe ME, the isolation is immense. I am not in this category but there are times I have tasted the severe end of moderate and it has filled me with disquiet.
So when I am able, let me in. I want to be friends, I want to socialise, I want to feel a part of your life. When I can’t, don’t erase me.
Let me know that you see me.
see also my old post: Tips for supporting a person with M.E.
Very expressive, very moving. Reminds me of my erstwhile boss’s-daughter, the only other sufferer I’ve known.
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So sorry Lucy we haven’t met as yet! You write do well..and l totally identify with all you say. x Keep being you,keep being strong and let’s make sure we meet up soon. Take care Pauline x
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Thank you Pauline x
Thank you, Lucy…I will never erase you. Or forget. As you are able, be in my face on this disease. It is good for me/us. ❤
Thanks so much, Bev.