Letting people know I'm ill

[keepswimming]

When I first got ill, all I wanted to do was talk about it, because it was having such a huge impact on my life. But since then I've stopped mentioning it, except to my closest friends. I got a bit disheartened because people often just don't understand. And I've been afraid of people thinking I'm moaning, or getting fed up with me talking about it. So I've just kept my mouth shut.

But today I posted something on social media, that referenced having CFS. I've never done that before - I normally just post about my good days. But I just got this feeling, I want people to be more aware the fact I have this illness and it affects my life. So I deliberately referenced it.

I got a direct message from a friend. It turned out, she never even knew I had CFS... I think she knew I was struggling with something but didn't know what, and hadn't really understood when I'd had to say no to things she's invited me to.

But I just had such a nice conversation with her, she was so apologetic for not knowing my diagnosis, and very keen to be educated in how it affects me. It made me feel really good, to be honest with someone about how CFS affects my life, instead of putting a brave face on all the time.

It made me think, I want to find a better balance. I don't want to talk about my illness all the time, but by not saying anything, I'm making it harder for myself because people aren't going to understand unless I explain. I kind of assumed everyone just knew I was ill... But that experience shows that's not true. And I want them to know, because it makes things so much easier when I have to say no to invitations etc.

Just on Sunday someone asked if I was well (genuinely, not just a passing comment) and I just said "yes" with a slight roll of the eyes to indicate, not really... So I messaged him afterwards and said, sorry I didn't say much because I don't like to go on, but... And then I explained that this illness is still affecting my life, and I'm having to manage it carefully.

So I think, moving forward, I want to work on allowing myself the luxury of admitting, no I'm not well... Its such a relief to be honest about it, and I think I need people to know.

Can anybody relate to this?

In particular I feel like I need to think of something to say when people say, "How are you?" that is more honest than "fine" but less involved than a half hour lecture on CFS!! Any suggestions?

 

[Rebeccare]

So I think, moving forward, I want to work on allowing myself the luxury of admitting, no I'm not well... Its such a relief to be honest about it, and I think I need people to know.

Can anybody relate to this?

I'm kind of like you! I don't hide my condition, but I tend not to advertise it either. When people ask my how I am, I smile and say: "Fine!" (or, on a bad day, "Hanging in there!"). It doesn't help that I can often 'pass' as healthy for the few hours I'm out and about each week.

At a certain point I just assumed that enough people in my friendship and work circles knew about my condition that it was just common knowledge, and I that wouldn't have to tell anybody else myself. I guess that assumption comes from being part of a close-knit Jewish community where news and gossip spreads fast (which can be convenient at times!).

So when I made my first Facebook post about having ME/CFS on Millions Missing day about four years ago, I was shocked by the responses: "I NEVER would have guessed you're sick!" "But you look so healthy!" and a few others that made it sound like people thought I was on death's door. Oops. I guess I assumed wrong!

In particular I feel like I need to think of something to say when people say, "How are you?" that is more honest than "fine" but less involved than a half hour lecture on CFS!! Any suggestions?

It's hard for me to be open about it in a way that doesn't feel like I'm trying to call attention to myself or ask for sympathy. I try to be matter of fact about it--I often use the same tone of voice I would use in complaining about car trouble ("The check engine light was on again today! It's a pain the behind, but what can you do?"). And I usually end up putting a 'but' in any sentence that involves my condition ("I'm having a tough time this week, but I'm hoping next week will be better"). I guess in doing that I'm still trying to minimize my condition, mainly because I don't want people feeling sorry for me. It's a fine line to straddle--getting people to understand that I'm sick and it sucks without sounding like I'm asking for pity.

What's harder is that usually when people say "How are you?" they aren't really asking how you are, they're just saying hello. When I was a little kid watching old movies it used to be terribly confusing when I saw people greeting each other by saying: "How do you do?" but nobody ever actually said how they were doing! I guess "How are you?" is the new "How do you do?"

So I guess, in addition to having a good 'script' for what you can say, it's important to also be able to figure out whether or not people are actually asking how you are (like your friend was). And I should add that having a few prepared scripts in your head is so helpful so you don't need to think up something on the spot, often in the midst of brain fog!

Sometimes I try to just very casually mention my condition in the context of how I'm doing, along the lines of "My fatigue isn't bothering me so much this week, so I feel great!" or "I'm having a tough time with my fatigue this week, so I'm trying to take things easy and just hang in there." That way it's clear that you have a fatigue problem, and if people want to know more they can ask but if they don't want to know more they can just respond appropriately. But I'll watch this thread with interest to see if I can pick up some better lines.

 

[Wishful]

What's harder is that usually when people say "How are you?" they aren't really asking how you are, they're just saying hello.

Yes, you have to judge whether the person really wants to hear that you aren't feeling well or really doesn't want that sort of response. One time a librarian (who I chatted with frequently) asked me that question, and I said something like "Okay, at least that's probably the answer you want to hear, rather than actual health complaints." She said "No, I really want to hear it.", so I gave a reasonable explanation for how lousy my ME was making me feel that day, and we had a nice discussion about social conventions.

My feeling is that in general, a stranger you meet really doesn't want to know about your medical problems. For a friend, neighbour or other associate, it's probably best to give an explanation of ME and how it affects your life. After that, you have to judge the individual whether they want to hear future reports or prefer to never have it mentioned again.

 

[Wolfcub]

I really admire your way of handling this @keepswimming

 

[Wolfcub]

It doesn't help that I can often 'pass' as healthy for the few hours I'm out and about each week.

The same thing happens to me. I look young for my age, 67 and have my hair in a girlie style and wear slightly tomboy clothes.
People say "You look well." They all know I had Covid (my local people, farmers and so on) and are so kind. But they don't really know about the "other thing".
Sometimes if invited for coffee, I'd have to skip coffee and ask for a herb tea. I just said coffee was giving me the heebie jeebies lately.
I find it hard to "come out" about ME/CFS though. I did a couple of times when I was not 100% sure if I had it or not but the doctor thought so. Then the people I may confide in say that I must -->-> go to the doctor!! Go to the hospital ! Get tests! So that can lead into a complicated conversation which I always wish I had cut short ten minutes before, because even I lose track of my wits.

 

[Rufous McKinney]

So I think, moving forward, I want to work on allowing myself the luxury of admitting, no I'm not well... Its such a relief to be honest about it, and I think I need people to know.

Can anybody relate to this?

Yes, its a huge struggle and aspect of this illness that is tough to handle. In my case, I have almost no contact with anyone. So I don't any longer have these superficial moments of somebody asking How are You? Or Have a Nice Day.

Its this need to be seen for who you are...in some basic way. Just - understanding. I think thats most of it.

I was having more and more difficulties with going to meetings, driving on freeways, 10 hour days..all this stuff associated with working. And the coworkers largely had no idea that anything is wrong, and nobody ever asks. Ironically, during the worst of this, I was managing this illness while using federally protected sick leave and due to medical privacy, I was actually supposed to never say what was wrong, why, or speak about it. So my direct supervisor actually did not know what the name of it is...what is wrong here.

I also got the feeling that you get gossiped about due to this ignorance.

Recently, I asked my daughter to post our Triple Tuesday fundraiser on Facebook. I don't normally do that...but this time I pushed myself to ask. So she posted this really sweet write up with the first sentence: THis is what my mom has...

Well, when she posts a picture of charming grandaughter she gets, oh 47 likes and 22 comments.

that post generated- 1 like. Otherwise virtual silence.

It wasn't surprising, yet there it is again. A couple of my "friends" follow my daughter on facebook- friends from my past life when I had a life. And there is this response ZERO.

So whats the take home message? I guess if you've managed to still have people in your life, they are precious and thank them for being there.

 

[Wishful]

So that can lead into a complicated conversation which I always wish I had cut short ten minutes before, because even I lose track of my wits.

A year or two ago I suggested we needed a t-shirt slogan to explain that chatting can trigger PEM. My candidate is: "Talking to you makes me sick!". It's totally honest!

Do you think some people might misunderstand it?

 

[Wolfcub]

I suggested we needed a t-shirt slogan to explain that chatting can trigger PEM. My candidate is: "Talking to you makes me sick!". It's totally honest!

Do you think some people might misunderstand it?

I guess that depends on what kind of smile you are wearing at the same time

 

[Rufous McKinney]

"Talking to you makes me sick!". It's totally honest!

I think we could generate some fundraising- selling such a t-shirt.

 

[lenora]

Good morning everyone....I'm not so very sure about that t-shirt, surely we can come up with something better as a way of opening conversation. How about ME makes me sick? Or a visor with that on it...people may notice it even more and actually ask what ME/CFS (I think we still need that in the U.S.A.). It's a good thought, though and should be carried through at some level.

I'm 73 and the era I was diagnosed in, along with a lot of neurological problems repaired by surgery, was not the one to admit to anything unknown. AIDS was rampant and the cause was still unknown. People were upset enough without dumping another "unknown" on the scared masses. It was kept silent for years, except for the hatchet job 'Time' Magazine did on us and the derision we were unfairly faced with.

So fast forward all these years. My family has always known...as a matter of fact my husband detected my illness before I even had a formal diagnosis. So, that was a huge bonus there and he has never faltered in his belief of my illness. Our daughters were teens, and we should have gone for counseling...rather they should have as I was bedbound for a long time after my first surgery (which caused a rapid deterioration in my ME/CFS condition). I would recommend that to all of you...it was the first super mistake we made and could have prevented much heartache in later years.

So, even today I have trouble telling others that my condition leaves me looking healthier than they often are (at least until this past year it did), but like you say....even too much talking can do me in, the list of can't do's is pretty long now, thanks to be my primary illnesses and the ME/CFS itself. I never told my family (because I didn't want anyone to worry...only one sister ever knew. She has now passed.) Friends now know, and it's suprising how many of them had their own secret illnesses of any type. This is a different time though, today things are different.

I don't know if I'll ever get back to walking like I used to (I fall easier and there are tremendous cracks due to soil changes in our area), but if I can get to the walking trail, I'm fine after that. But I do the the equivalent of an hour of exercise/day, or more if I want, and that's bringing back parts of my body that have been long gone. CAVEAT: Don't just start exercising. Fine a myofascial therapist (they generally have Ph.D.'s and are especially trained in this. They work on the tissues of the body and give exercises especially for people like us (me), we have to start off slowly, carefully and then build up little by little. You can get a prescription for PE from your doctor. He probably knows of someone who specializes in ME, it's worth asking (your neurologist that is).

As people age, I find that almost everyone understands. I'm not invited to too much...but that's fine, I don't want to be, especially when my energy is gone totally...anytime after 3:30 p.m. or 4:00 p.m. My sleep is erratic so I can go for no sleep for days and nights, then have a decent period of 6 days or so, but I tend to be up by 5:30 a.m. at the latest. Definitely not the teenage years!

In the very early days, we founded organizations to help the many conditions that often arise from ME/CFS. Personally, I believe that ME is merely a symptom of something else that has gone haywire. I'm one of the lucky few, and I felt I had to give back. I wanted to do so and I did. I found a neurologist who just happened to recognize one of my illnesses (MRI's were brand new then. I had one of the early ones in Dallas @ 3:00 a.m. and was grateful to have it available.) From there two diagnoses were made and surgery was the answer for both of them. The first was bad, it's no longer done, and the second controlled the illness and it hasn't given anymore difficulties. I no longer have hydrocephalus for example. It should be noted that the doctors I dealt with who recognized this had either worked in a 3rd World Country as a volunteer, or were actually from one and recognized the symptoms and the problem. Like I said...fortunate.

Today, your choices are better. Your chances of actually talking to family, friends and neighbors is all the more easier to undertake. People have finally heard of it...in the U.S. it's CFS/FM. You could mentioned the movie 'Unrest' and even write it down for them...it's still playing, but I believe it's now on Amazon Prime. I would try Netflix again, though. Things come and go. Good luck with all you're facing. Yours, Lenora.

 

[keepswimming]

Hi everyone! Thanks so much for your replies, I found them really helpful.

I'm kind of like you! I don't hide my condition, but I tend not to advertise it either. When people ask my how I am, I smile and say: "Fine!" (or, on a bad day, "Hanging in there!"). It doesn't help that I can often 'pass' as healthy for the few hours I'm out and about each week.

Yes, we sound pretty similar! If I do mention I'm not feeling too good, the comment I often get back is "well, you're looking well". (@Wolfcub you mentioned this too) Which I'm sure is meant as a compliment! But sometimes it would be easier if this illness was a little less invisible, wouldn't it...

I usually end up putting a 'but' in any sentence that involves my condition ("I'm having a tough time this week, but I'm hoping next week will be better").

I really like this @RebeccaRe . I want to make people a little more aware of the fact I'm ill! But like you I don't want to seem like I'm asking for sympathy. By adding that "but" it makes it a little less negative but still flagging up the fact I'm not well... and I think it protects myself a little. Sometimes in the past I may have told someone I was feeling rubbish, and they just seemed uncomfortable, or said entirely the wrong thing - and I know they didn't mean to, but it hurt me. I think putting the "but" and something positive would stop me from feeling quite so vulnerable, if that makes sense. Just a personal feeling.

Sometimes I try to just very casually mention my condition in the context of how I'm doing, along the lines of "My fatigue isn't bothering me so much this week, so I feel great!" or "I'm having a tough time with my fatigue this week, so I'm trying to take things easy and just hang in there."

I also really liked this! I've already used it a couple of times this week. I think just casually mentioning it suits me. Because if the person wants to know more, they can ask. If they don't want to, they don't have to - again, it takes away that vulnerability, I'm less likely to feel hurt than if I've said something heartfelt! But it's still raising that awareness again. I also like the idea of using the word "fatigue". I think I have often been using words like "tired" or "energy" but that doesn't mean much to people! "Fatigue" makes it obvious it's something more than the average person experiences.

My feeling is that in general, a stranger you meet really doesn't want to know about your medical problems. For a friend, neighbour or other associate, it's probably best to give an explanation of ME and how it affects your life. After that, you have to judge the individual whether they want to hear future reports or prefer to never have it mentioned again.

Absolutely! I think who is asking, and the setting makes a big difference. If someone is passing me in a corridor and asks, "are you alright?" they probably don't want me to pull them aside and tell them! But with people I will have dealings with more often, it's worth flagging it up, and then taking it from there. Good ideas, thank you.

I really admire your way of handling this @keepswimming

I feel like I'm still figuring it out - but thank you so much

Its this need to be seen for who you are...in some basic way. Just - understanding. I think thats most of it.

Yes. Understanding means so much. The times I have been hurt by peoples words - I know they haven't meant to hurt me. But it hurts because they don't understand.

A year or two ago I suggested we needed a t-shirt slogan to explain that chatting can trigger PEM. My candidate is: "Talking to you makes me sick!". It's totally honest!

Lets do it!

Today, your choices are better. Your chances of actually talking to family, friends and neighbors is all the more easier to undertake. People have finally heard of it...in the U.S. it's CFS/FM.

I agree. I have only been sick for a couple of years, and actually on the whole I've met with - if not understanding, at least belief. People may not be able to empathise, and they might say the wrong things through lack of understanding, but on the whole they haven't questioned that this is a real medical condition. And I think that is because awareness has improved in recent years. Which is at least one good thing.

 

[Wishful]

I also like the idea of using the word "fatigue".

To improve that, use the term "central fatigue", which you'll have to explain that it is not just feeling tired, but is a neurological condition that feels something like being tired, but includes other nasty dysfunctions.

 

[Wolfcub]

Yes, we sound pretty similar! If I do mention I'm not feeling too good, the comment I often get back is "well, you're looking well". (@Wolfcub you mentioned this too) Which I'm sure is meant as a compliment! But sometimes it would be easier if this illness was a little less invisible, wouldn't it...

Yes, I guess it would. I always used to do a power-washing job every year for a neighbour who has endless driveways, paths, stone steps, and I recall how awkward I felt last year when I finally decided to be sensible and say no to the work. I am always ready to soldier on, but I knew that was seriously unwise. It's hard physical work.

So I turned up to meet with them and they invited me for coffee (which I couldn't drink and had to tell them it made me shake all over) Then they very kindly gave me a bottle of red wine (which I can't drink because it rushes through me like a freight train) .....Invited me to dinner later(which I can't eat, so had to thank them but also had to make an excuse re: what I had to do that evening.)
Then I had to tell them I couldn't do the work this year....because I have some queer thing that might be ME/CFS ("what's that?")"....well it means I feel symptoms and they are horrible, plus terrible exhaustion if I push myself too hard"

I got such a strange look from her, and she said almost under her breath, "well you look fine to me."

I cried when I came home. Sad for the old days.

 

[Wolfcub]

To improve that, use the term "central fatigue", which you'll have to explain that it is not just feeling tired, but is a neurological condition that feels something like being tired, but includes other nasty dysfunctions.

I think that's a good description @Wishful

 

[Rufous McKinney]

I got such a strange look from her, and she said almost under her breath, "well you look fine to me."

Ok, that was just far far too tragically funny. I"m so sorry it made you cry. Well maybe you just needed one of those.

At times recently, when I Might occasion to be near some one who might wonder- I mumble something along the lines of- neurology- Send me to the Dept. of Neurology...something like that.

Again a big confliction is: are we ambassadors for others who suffer? In which case we should state our condition widely, seek to educate and inform, and generally make it widely known. We should be brave and courageous for each other.

Except we all know how that goes. And why is it so hard?

 

[Wishful]

I got such a strange look from her, and she said almost under her breath, "well you look fine to me."

That's when you chirp cheerfully: "That's because I avoided doing anything strenuous yesterday!"

... or: "Well, you should see me the day after I do something like that. Except that it doesn't have obvious physical signs such as blood shooting out of my ears. If other people could feel what PEM is like, they would be properly horrified."


Hmmm, ME is something like migraines (or menstrual cramps or a whole host of other invisible things that ruin your day): other people can't see how disabling they are; it all comes down to judgement about whether the person is honest about the severity or is lying about it. Since most people probably don't experience invisible disabilities, they can't really understand such things.

 

[Wolfcub]

That's when you chirp cheerfully: "That's because I avoided doing anything strenuous yesterday!"

... or: "Well, you should see me the day after I do something like that. Except that it doesn't have obvious physical signs such as blood shooting out of my ears. If other people could feel what PEM is like, they would be properly horrified."

Yes...if they felt it they would know! I hope they never have to, though admit that if they did, we would have an easier ride.
That power-washing job also took two weeks to complete!

Since most people probably don't experience invisible disabilities, they can't really understand such things.

Some do. I learned recently that a woman who walks her dogs by my house suffered from IBS. One would never guess.
And the farmer's son (their land adjoins mine) who always looks fit and well, is battling with MS. Also his father has rheumatoid arthritis and takes immuno-suppressants. I never knew that. He always looks well and never talks about it.

 

[Wishful]

I learned recently that a woman who walks her dogs by my house suffered from IBS. One would never guess.

I don't think that having ME makes me all that much better at accepting other people's invisible disabilities. I've never had a migraine, and I certainly have never felt a menstrual cramp, so really I can only go by how much I trust someone else's claims about the severity of their disability. I can read that overcoming a nicotine addiction is hard, but since I lack that personal experience, I simply can't truly comprehend it, so I truly can't feel sympathetic for smokers. That's just human nature.

I don't think there's any point in trying to educate people about how disabling ME feels. A better target would be to get official recognition of how disabling it is, supported by scientific reports. Then we can say: "Sorry, I can't powerwash your paths because that's against the official medical recommendations. It would do too much cellular damage (or other such official technical terms)."

 

[lenora]

Yes, I guess it would. I always used to do a power-washing job every year for a neighbour who has endless driveways, paths, stone steps, and I recall how awkward I felt last year when I finally decided to be sensible and say no to the work. I am always ready to soldier on, but I knew that was seriously unwise. It's hard physical work.

So I turned up to meet with them and they invited me for coffee (which I couldn't drink and had to tell them it made me shake all over) Then they very kindly gave me a bottle of red wine (which I can't drink because it rushes through me like a freight train) .....Invited me to dinner later(which I can't eat, so had to thank them but also had to make an excuse re: what I had to do that evening.)
Then I had to tell them I couldn't do the work this year....because I have some queer thing that might be ME/CFS ("what's that?")"....well it means I feel symptoms and they are horrible, plus terrible exhaustion if I push myself too hard"

I got such a strange look from her, and she said almost under her breath, "well you look fine to me."

I cried when I came home. Sad for the old days.

Hi Wolfcub...and everyone else,

It makes me mad when I hear people making others feel less than their worth b/c of a comment they made. It's always easy to think of retorts after the interface, but the fact is that many, many cancer patients look radiantly healthy in between their diagnosis, treatments and return to life. Would your neighbor have said such a thing to that person?...not on your life!

I don't know how you arm yourself against such hurtful behavior...perhaps dropping her a note telling her to watch 'Unrest' may make some impression. Sadly, it's even more of an uphill battle in England b/c the govt. only just recently decided the GET therapy was wrong. Unfortunately, a lot of damage has been done in the way people think of ME, and it's frustrating to never know what their teensy little thoughts are.

I can only say that you're a hard working, hard driving person who is merely seeking understanding and acceptance in your life. I, myself, am able to say that I'm a 3rd member behind Jen and Jeff of having two "out there" causes of this illness. For many of us, this is an added diagnosis. One I'd rather live without, as you well know. But the other truth is this: As time passes more and more of us will be found and we won't be considered as atypical. This woman would certainly want understanding if she developed coronavirus and it took mos. or she never fully recovered, wouldn't she? I'm sorry this occurred to such a fine, fine person. Yours, Lenora xo

 

[Wolfcub]

Thank you for your kind thoughts @lenora