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Turning down invitations
Long COVID has upended our lives, that I know. For those who've had it since 2020, I do not know how you have survived if your symptoms are as bad as mine. And I'm just 2 years, 5 months in.
Here's where I need help/advice -- well, one thing: Bec of this, I retired from self-employment in Dec. 2024, tho' didn't announce publicly until May this year. (It just felt too awful after 44 years of my own biz.) All the usual "congratulations" posts on social media which, when a bit more like my contributions were like a pre-Celebration of Life! Nice to be alive to read it!
It's NOW - friends come into town and want to see me - for a meal or to come over; those in town think that now that I have all the time in the world I should be eager to see them or have them "make something to eat" and come over. I can't - literally CANNOT. To shower and put on clothes I'd want to be seen in takes up to 3 hours and wears me out. I am rarely not in pain. The exhaustion hits when it chooses - yesterday, I literally couldn't wake up - or I'd wake, and within 5 minutes, fall back to sleep.
How do you explain it to people, this awful illness about which only those of us with it know? I've put people off even for Zoom unsure I want to be seen or have the energy to talk. I'm still doing a bit pro bono consulting bec my brain needs stimulation. How many times can you say "no, thanks, tho' I so appreciate your offer" without losing friends? A dear friend called the description of our ills "organ recitals" which I know too few want to hear. How else?
It feels so rude when people want to be nice!
Thanks.
JE
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All of your post rings very true for me also. The aspect of close friends and family completely just not getting it, but not caring to take the time to learn about it now has me more than frustrated. I'm at the one year mark and that's still going on, actually has gotten worse. Many days just feeding the cats and throwing something in the microwave feels like I climbed Mount Everest and can't get back to bed soon enough! How being expected to still go out to eat, have others here to eat, even a long chat on the phone or online just isn't doable most often is beyond me now. My Stepmom and Stepsister live in the connected building next to mine. Neither has stepped foot in my apartment or even asked to. My old next door neighbor who I texted with or talked to several times a week also hasn't visited. Don't get me wrong, I'm really not able to engage in even a quick visit, but there's no trying to be "nice" coming my way from anyone now. Sorry to say I have no advice, but can only commiserate. I'm trying to settle in to acceptance of this. I can't change them. Can't force them to gain knowledge in order to understand. It's only hurting me and is sort of at my own hand now as I'm accepting their behavior. We shouldn't have to deal with this on TOP of all else. PS: How do you move on to a new paragraph here? Can't figure it out. 🙄
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1 ReactionHello @jeindc,
I’m so sorry you’re suffering with this. I totally relate as I’ve had ME/CFS for 40 years. Saying no to pretty much everything and trying to explain my illness, even to doctors, when I “look great”, has been almost as frustrating as dealing with the many debilitating symptoms of it.
Long Covid and ME/CFS share many similarities. I’ve tried over the years to explain it but most people will never get it unless they have it or live with someone who does. They may be kind hearted (and some maybe not so much) but how can they possibly understand such a life altering affliction without experiencing it? It’s just so frustrating. We raised three children while I was sick and I honestly think they still don’t even fully get it. Thankfully my husband does and is now my caregiver and advocate.
I would suggest you check out Solve ME’s website for encouragement and information. This fantastic organization has been around since the 80’s and they now include Long Covid. I have sent their informative articles to people and posted them on social media to try to educate people.
Sending good thoughts and best wishes!
https://solvecfs.org/me-cfs-long-covid/patient-and-caregiver-resources/
Yes, we sure find out who our real friends are don’t we? I was very hurt in the early years of my ME/CFS by that same thing too. Many years later when Facebook came along I’d post informative articles occasionally to spread awareness and make mention of my struggles with it. It did help some people who wanted to understand. Over the years I’ve made some wonderful new friends online who shared similar stories.