Article The Apologizers of the ME/CFS World

The Apologizers of the ME/CFS World

by Jody Smith​

I'm Canadian, so I hear a lot of good-natured jokes about how Canadians apologize all the time. It's funny in part because ... in part, it's true. But you know who else apologizes a lot? Chronically ill people. And that ain't so funny.

Now some of us were probably like that before becoming ill. But what's particularly interesting and maybe a bit disturbing, is how many of us have gone from being confident, even strident, self-assured people unapologetically filling our space to ... sorry for requiring someone's attention, sorry for having needs, for taking up too much room, too much time ... too much air ...

Do you know what I mean? Do you know some chronically ill who do this? I did it. Maybe you did it too. If not, you probably know someone who have been shrunk this way by their unending illness.

I had been a busy, opinionated woman before I got sick. My husband Alan and I homeschooled our five kids. I helped run a county-wide homeschool support group and was on the phone with members 40 hours a week.

We went to every field trip and if I didn't help organize it I kept my finger on the pulse of every event. I had a to-do list that I'd drawn 5 columns onto for every day of the week. I never forgot a detail.

I was involved in several departments in the church I attended, and scheduled some others that I wasn't part of. I was a moderator on three different forums (years before I found Phoenix Rising) and doing the occasional paid editing work.

Alan and I ran a website with 40 writers, I wrote two or three articles on various topics for the website most days and edited everything that went on the site before I published it.

You bet I was opinionated. I was sought after in my particular circles. I expected people to respect my space. And mostly they did.

And then I got sick. Over a couple of years I down-sized my life, left all my positions of action and influence ... and lost all the people I'd felt were part of my life. Well, they weren't. And it took a toll on me.

I was so astonishingly expendable. That was an enormous shock. Almost two decades later, it's still a shock when I think about it. I used to think about it all the time.

Eventually I got to the point where I did not spend so much time on it any longer. But when I do for more than a minute, the whole thing flares up for me again. So I try to avoid doing this.

Life without the things that made me feel valuable and engaged took a toll on my sense of identity and left me feeling lost. I had no currency to offer anyone -- and nobody was clamouring for it anyhow. And certainly nobody was giving me any. What I used to get from other people ... never came anymore.

Life went on around me ... or no, it didn't. I was so far removed from any of that. I saw my kids, my husband, my mother and my naturopath -- and I know I was lucky to have them. But ... things had gotten so much smaller for me. I had gotten much smaller.

I did a lot of apologizing. If I needed someone to do something for me because I couldn't do it myself, I apologized. If my illness was causing complications for my family, I apologized. If I couldn't do the things I used to for them I apologized. That doesn't mean they expected or wanted my apology ... I was compelled by a sense of guilt and inadequacy.

I didn't feel that I had anything to offer anymore. I just didn't feel like I mattered. I forgot what it was like to matter. To other people and to myself.

And then I found Phoenix Rising, and I saw people with my apology syndrome everywhere I looked. People would preface their post with an apology -- I'm sorry, you probably won't find this very interesting. I'm sorry for taking your time. I'm sorry for sounding stupid. I'm sorry if this post is too long. I'm sorry ... I'm sorry ...

I would exchange private messages and emails with other Phoenix Rising members. This was a wonderful experience for me after years of isolation. It was a whole new life opening up for me! But still I apologized. And so did my friends when they wrote to me.

I decided to try to change my ways. I decided to go back and re-write any apologies that came out of my keyboard.

Instead of saying I was sorry, I would say .... I wasn't able to get back to you sooner ... without apologizing. I would take a deep breath and launch into my story that I found interesting and refused to worry about whether the recipient would concur. I'd state my differing opinion and let it stand without ... apology.

You get the idea.

I found that it required a huge change in my vocabulary, my way of wording things. My way of thinking. It took work. But I have found that it has been worth it for me.

With a few close friends I would talk about this common malady we shared, and we would try together. We would assume that our friends wanted to hear what we had to say.

And in the process we would shore each other up with acceptance, and nurturing words that underscored that yes, they are important and yes, they are worth being listened to. Yes, we cared about each other. That was gold right there, my friend.

We had a right to our thoughts and feelings and opinions. We had a right to food and shelter. We had a right to think of ourselves as valuable human beings. We took up space. We had the capability to expand and enlarge our space, our boundaries. We could say no. We could disagree with other people. We could get mad.

Boy! Could I get mad. I tapped into an absolute fury that I realized I had been brewing and bubbling since I first got sick and sidelined.

I decided it was okay for me to speak up and say I don't like that. I don't want to do that. I need something. This makes me angry and I'm done swallowing it. I'm bloody well going to voice it. Don't like it? Too bad.

I swung pretty far in the opposite direction for a time, and realized eventually that I needed to find a balance. But that balance had to include my right to be. Without apologies.

It's an ongoing process, giving myself permission to fill up my life, with myself, for myself. Taking other people's time, requiring other people's attention. Expecting to be part of the living, noise-making world.

Our chronically ill lives may not be very big anymore. They may not encompass the interests and people and activity that we enjoyed in the past. We may not get the kind of encouragement and acknowledgement we did in the past. But what we have is ours, and it is hard-won. And nothing to apologize for.

Have you caught yourself apologizing for your existence? Please feel free to step up here and use your voice. I want to hear it.

Image by kalhh from Pixabay

 

But what's particularly interesting and maybe a bit disturbing, is how many of us have gone from being confident, even strident, self-assured people unapologetically filling our space to ... sorry for taking someone's time, sorry for having needs, for taking up too much room, too much time ... too much air ...

Do you know what I mean?

Yes. I know exactly what you mean!

 

Yes. I know exactly what you mean!

Pyrrhus

I think it may be an epidemic in our community.

 

Yes I found myself apologising today because I had felt bad earlier, thus couldn't work, and the work had to be done by others who also aren't feeling that great. I was genuinely sorry about that.
But of course - nothing I could do.

In the past I always 100% honoured any promise, or commitment, or need for punctuality, or basically any energy expenditure that was required, for as long as it took.
And always got away with it! One good sleep and I was back again.

But now the body throws hissy-fits whenever it feels like it. Sometimes I can wake up in the morning and feel okay but will get hit with some physical drama suddenly in the afternoon.
Or vice-versa; too unwell to do much....then the sun goes down and I'm on a couple more cylinders. Randomly, inexplicably, and impossible to predict.

So it's hard NOT to say "sorry" at times.

But this reminds me that I am not the "me" I used to be. I am a very valuable "me" but now a different one. Maybe I shouldn 't apologise for that?

 

Yes I found myself apologising today because I had felt bad earlier, thus couldn't work, and the work had to be done by others who also aren't feeling that great. I was genuinely sorry about that.
But of course - nothing I could do.

In the past I always 100% honoured any promise, or commitment, or need for punctuality, or basically any energy expenditure that was required, for as long as it took.
And always got away with it! One good sleep and I was back again.

But now the body throws hissy-fits whenever it feels like it. Sometimes I can wake up in the morning and feel okay but will get hit with some physical drama suddenly in the afternoon.
Or vice-versa; too unwell to do much....then the sun goes down and I'm on a couple more cylinders. Randomly, inexplicably, and impossible to predict.

So it's hard NOT to say "sorry" at times.

But this reminds me that I am not the "me" I used to be. I am a very valuable "me" but now a different one. Maybe I shouldn 't apologise for that?

Bingo! There you go, Wolfcub.

That is exactly it. And maybe catch yourself when you are going to apologize for something ... and see if there is another way to say it without "apology" or "sorry" in it. Can be quite challenging. But rewarding. And I have found it often to be eye opening as well.

 

I'm probably one of the most apologetic people around, I try to be as reasonable and helpful as possible. I always assumed that was just being reasonable. I tend to take a long time to get over things. People like me, perhaps carry repressed anger, are sensitive to criticism and have learned to avoid conflict.
I don't know if you have heard of a fellow called Gabor Mate, I'll link a video to him at the bottom, he is a doctor and psychiatrist and studies psycho~neuro~immunology.
Essentially he, and the field, believes (in a nutshell) that repressed anger, stress and childhood trauma results in a long process that ultimately results in autoimmunity or autoimmune like diseases.

This has also been seen in large population studies

He does make mention of agreeable people being more prone to disease.

 

Essentially he, and the field, believes (in a nutshell) that repressed anger, stress and childhood trauma results in a long process that ultimately results in autoimmunity or autoimmune like diseases.

I've met many who meet that definition who suffer nothing like this illness. As for myself, my anger is hardly repressed and largely due to the dismissal of the seriousness of my suffering.

 

I've met many who meet that definition who suffer nothing like this illness. As for myself, my anger is hardly repressed and largely due to the dismissal of the seriousness of my suffering.

Oh I'm sure it's not a 100% correlation. Some people seem to handle anything. I certainly have my outbursts too. Psychoneuroimmunology might tell us quite a bit in the future

 

I suspected I was the only one doing this, apologizing to absolutely everybody, but it makes sense that I'm not alone. And your story seems much the same as mine.. a self-perceived regression into uselessness.

Posting here I often do the same thing, apologize ahead of time in case my words aren't worth the time and (limited) energy spent by others who choose to read it. And this apologizing goes far beyond that.. to the extent that each time the paramedics come to transport me to the hospital, I sincerely apologize for not being able to drive myself there.

And finally, my wife got so fed up with my incessant apologizing I affixed a semi-permanent reminder to my feeding tube stand (seen here):

It's sometimes difficult when nearly everyone you know and love disappears from your life (and everything you once did, you can no longer do), but it's important not to blame ourselves for the illness. There's already enough real suffering to go around for each and every one of us. Now, if I can just 100% convince myself of this truth.

Thank you for sharing,
H

 

Now, if I can just 100% convince myself of this truth.

I was particularly apologizing yesterday..me unable to come thru for my husband. He was so forelorn looking....our car needs service and this is the first time in our lives that we don't have a second car, or me able to drive very far.

The car is so important to him, as he is now hobbled and cane-ridden. He wants to get out- he staggers down our stairs and its his main- momentary escape.

Forever- trying to explain it. Why can't I just drive 14 miles.

Him still insisting..I could do it....I finally had to yell. "Look at me! What is my most funnest enjoyable thing? Its reading a New Yorker. Its pretending I'm writing a story, that will run in the New Yorker. And I cannot read a New Yorker- any more" .

He found somebody else finally to drive him.

 

I'm probably one of the most apologetic people around, I try to be as reasonable and helpful as possible. I always assumed that was just being reasonable. I tend to take a long time to get over things. People like me, perhaps carry repressed anger, are sensitive to criticism and have learned to avoid conflict.
I don't know if you have heard of a fellow called Gabor Mate, I'll link a video to him at the bottom, he is a doctor and psychiatrist and studies psycho~neuro~immunology.
Essentially he, and the field, believes (in a nutshell) that repressed anger, stress and childhood trauma results in a long process that ultimately results in autoimmunity or autoimmune like diseases.

This has also been seen in large population studies

He does make mention of agreeable people being more prone to disease.

This is exactly me ..I tried to repress my anger and resentment for so many years.I tend to avoid conflict as far as possible.But then I become resentful. Had no childhood trauma but a concussion and abusive husband were the big stressors. Now I have Sjogrens and bunch of other autoimmune illnesses.
I will check out the above video , thank u so much for posting it.

 

I'm probably one of the most apologetic people around, I try to be as reasonable and helpful as possible. I always assumed that was just being reasonable. I tend to take a long time to get over things. People like me, perhaps carry repressed anger, are sensitive to criticism and have learned to avoid conflict.
I don't know if you have heard of a fellow called Gabor Mate, I'll link a video to him at the bottom, he is a doctor and psychiatrist and studies psycho~neuro~immunology.
Essentially he, and the field, believes (in a nutshell) that repressed anger, stress and childhood trauma results in a long process that ultimately results in autoimmunity or autoimmune like diseases.

This has also been seen in large population studies

He does make mention of agreeable people being more prone to disease.

Thanks for the videos Jjnz.

 

I suspected I was the only one doing this, apologizing to absolutely everybody, but it makes sense that I'm not alone. And your story seems much the same as mine.. a self-perceived regression into uselessness.

Posting here I often do the same thing, apologize ahead of time in case my words aren't worth the time and (limited) energy spent by others who choose to read it. And this apologizing goes far beyond that.. to the extent that each time the paramedics come to transport me to the hospital, I sincerely apologize for not being able to drive myself there.

And finally, my wife got so fed up with my incessant apologizing I affixed a semi-permanent reminder to my feeding tube stand (seen here):

View attachment 40029

It's sometimes difficult when nearly everyone you know and love disappears from your life (and everything you once did, you can no longer do), but it's important not to blame ourselves for the illness. There's already enough real suffering to go around for each and every one of us. Now, if I can just 100% convince myself of this truth.

Thank you for sharing,
H

Howard

You are right. Your wife is right. That sign is an absolute marvel and I love it Keep on working at convincing yourself. It's a journey, but it's worth it and any progress you make in that direction will make a difference in your life -- and apparently in your wife's life Just don't start apologizing for apologizing! Or ... because you are probably already doing that -- make a sign that says "Stop apologizing for apologizing!"

 

I was particularly apologizing yesterday..me unable to come thru for my husband. He was so forelorn looking....our car needs service and this is the first time in our lives that we don't have a second car, or me able to drive very far.

The car is so important to him, as he is now hobbled and cane-ridden. He wants to get out- he staggers down our stairs and its his main- momentary escape.

Forever- trying to explain it. Why can't I just drive 14 miles.

Him still insisting..I could do it....I finally had to yell. "Look at me! What is my most funnest enjoyable thing? Its reading a New Yorker. Its pretending I'm writing a story, that will run in the New Yorker. And I cannot read a New Yorker- any more" .

He found somebody else finally to drive him.

Rufous McKinney

Your inability is real. Your husband's dilemma is real. But you can no more drive than you can create a working car by concentrating on it. It's rotten not being able to do things for ourselves or for the ones we love. And the list of the things that we can't do and haven't done is endless. But we didn't fail them. That would require that we had the ability and refused to use it. And we don't. And that's the point isn't it. If anyone should be apologized to -- it's us! Just kidding. Well. Sort of.

 

And yet the medical community / professionals treat us like we are either seeking sympathy, or just too lazy to exercise enough to stop being deconditioned. After all, as there is nothing REALLY wrong with us, it must be just our excuse for not being useful!
Yea . . . right!!!!

 

And yet the medical community / professionals treat us like we are either seeking sympathy, or just too lazy to exercise enough to stop being deconditioned. After all, as there is nothing REALLY wrong with us, it must be just our excuse for not being useful!
Yea . . . right!!!!

DomSaxum

Yeah they are so far off the mark it takes the breath away doesn't it. I wish there was some way to change that, but it's been a fixture for as long as this illness has existed. Come to that this type of medical ignorance has been around since before any of us got sick. It's been there for every illness until medical tests had been devised to detect them. Same rotten treatment for MS and a long list of others.

I'm glad we finally have some researchers and journalists who are fighting for us. Maybe they will make a difference that will improve things for us. And in the meantime we just stand (or sit or lie down) solid in what we know to be true, no matter what any naysayers think. We know how sick we are. We know what we have to endure. And we know we have nothing to apologize for. We are worth the air we breathe, the food we eat, the space we take up ... Not sorry!

 

The Apologizers of the ME/CFS World

by Jody Smith​

I'm Canadian, so I hear a lot of good-natured jokes about how Canadians apologize all the time. It's funny in part because ... in part, it's true. But you know who else apologizes a lot? Chronically ill people. And that ain't so funny.

View attachment 40006


Now some of us were probably like that before becoming ill. But what's particularly interesting and maybe a bit disturbing, is how many of us have gone from being confident, even strident, self-assured people unapologetically filling our space to ... sorry for requiring someone's attention, sorry for having needs, for taking up too much room, too much time ... too much air ...

Do you know what I mean? Do you know some chronically ill who do this? I did it. Maybe you did it too. If not, you probably know someone who have been shrunk this way by their unending illness.

I had been a busy, opinionated woman before I got sick. My husband Alan and I homeschooled our five kids. I helped run a county-wide homeschool support group and was on the phone with members 40 hours a week.

We went to every field trip and if I didn't help organize it I kept my finger on the pulse of every event. I had a to-do list that I'd drawn 5 columns onto for every day of the week. I never forgot a detail.

I was involved in several departments in the church I attended, and scheduled some others that I wasn't part of. I was a moderator on three different forums (years before I found Phoenix Rising) and doing the occasional paid editing work.

Alan and I ran a website with 40 writers, I wrote two or three articles on various topics for the website most days and edited everything that went on the site before I published it.

You bet I was opinionated. I was sought after in my particular circles. I expected people to respect my space. And mostly they did.

And then I got sick. Over a couple of years I down-sized my life, left all my positions of action and influence ... and lost all the people I'd felt were part of my life. Well, they weren't. And it took a toll on me.

I was so astonishingly expendable. That was an enormous shock. Almost two decades later, it's still a shock when I think about it. I used to think about it all the time.

Eventually I got to the point where I did not spend so much time on it any longer. But when I do for more than a minute, the whole thing flares up for me again. So I try to avoid doing this.

Life without the things that made me feel valuable and engaged took a toll on my sense of identity and left me feeling lost. I had no currency to offer anyone -- and nobody was clamouring for it anyhow. And certainly nobody was giving me any. What I used to get from other people ... never came anymore.

Life went on around me ... or no, it didn't. I was so far removed from any of that. I saw my kids, my husband, my mother and my naturopath -- and I know I was lucky to have them. But ... things had gotten so much smaller for me. I had gotten much smaller.

I did a lot of apologizing. If I needed someone to do something for me because I couldn't do it myself, I apologized. If my illness was causing complications for my family, I apologized. If I couldn't do the things I used to for them I apologized. That doesn't mean they expected or wanted my apology ... I was compelled by a sense of guilt and inadequacy.

I didn't feel that I had anything to offer anymore. I just didn't feel like I mattered. I forgot what it was like to matter. To other people and to myself.

And then I found Phoenix Rising, and I saw people with my apology syndrome everywhere I looked. People would preface their post with an apology -- I'm sorry, you probably won't find this very interesting. I'm sorry for taking your time. I'm sorry for sounding stupid. I'm sorry if this post is too long. I'm sorry ... I'm sorry ...

I would exchange private messages and emails with other Phoenix Rising members. This was a wonderful experience for me after years of isolation. It was a whole new life opening up for me! But still I apologized. And so did my friends when they wrote to me.

I decided to try to change my ways. I decided to go back and re-write any apologies that came out of my keyboard.

Instead of saying I was sorry, I would say .... I wasn't able to get back to you sooner ... without apologizing. I would take a deep breath and launch into my story that I found interesting and refused to worry about whether the recipient would concur. I'd state my differing opinion and let it stand without ... apology.

You get the idea.

I found that it required a huge change in my vocabulary, my way of wording things. My way of thinking. It took work. But I have found that it has been worth it for me.

With a few close friends I would talk about this common malady we shared, and we would try together. We would assume that our friends wanted to hear what we had to say.

And in the process we would shore each other up with acceptance, and nurturing words that underscored that yes, they are important and yes, they are worth being listened to. Yes, we cared about each other. That was gold right there, my friend.

We had a right to our thoughts and feelings and opinions. We had a right to food and shelter. We had a right to think of ourselves as valuable human beings. We took up space. We had the capability to expand and enlarge our space, our boundaries. We could say no. We could disagree with other people. We could get mad.

Boy! Could I get mad. I tapped into an absolute fury that I realized I had been brewing and bubbling since I first got sick and sidelined.

I decided it was okay for me to speak up and say I don't like that. I don't want to do that. I need something. This makes me angry and I'm done swallowing it. I'm bloody well going to voice it. Don't like it? Too bad.

I swung pretty far in the opposite direction for a time, and realized eventually that I needed to find a balance. But that balance had to include my right to be. Without apologies.

It's an ongoing process, giving myself permission to fill up my life, with myself, for myself. Taking other people's time, requiring other people's attention. Expecting to be part of the living, noise-making world.

Our chronically ill lives may not be very big anymore. They may not encompass the interests and people and activity that we enjoyed in the past. We may not get the kind of encouragement and acknowledgement we did in the past. But what we have is ours, and it is hard-won. And nothing to apologize for.

Have you caught yourself apologizing for your existence? Please feel free to step up here and use your voice. I want to hear it.

Image by kalhh from Pixabay

Thanks for this post!!! I have always been a pleaser, a doormat, and continued for some time after I was unable to work, then unable to help much around the house, etc. My hubby truly understands, and most of my family too. I limit interactions to only those that understand me, and the docs who I have to see. Many docs are clueless and I refuse to waste my precious energy on them! Thanks again for sharing!

 

I'm too tired to write coherently about how much I relate to this essay, so I'll just say: here, here!

The best advice I received on this subject so far has been to say 'thank you' instead of 'I'm sorry.' For example:

(you can see the whole comic here)

I like the advice because a 'thank you' acknowledges the situation but doesn't imply that I'm blameworthy or I don't matter.

 

Thank you @Jody for this very well written article!
The problem is,people somehow expect you to be and to say sorry for taking their time,or their effort. If its in the hospital(where peopleget paid for helping/assisting you) or if its family .
I have no problems with saying „sorry“ and „Thank you“ but I cant get rid of thatlousy feeling when people reply „your welcome“.
The sound of that reply usually tells me wheter it really was ok for them to help or not. And sometimes even well meant words leave you feel like a burden.

 

I am in the midst of down-sizing my life and this article hit home. I've been saying I'm sorry when I have to cancel a meeting and yet I've got some anger that people don't understand how bad I feel from ME/CFS when I cancel.
My work emails/zoom meetings/virtual coffees have slowed down and I'm mixed with relief that I won't let people down and sadness that my life is getting smaller and I'm not nearly as relevant as I once was.

There is a loss of fitting in and belonging to the able-bodied, productive world that underlies my apologies - it is, in part, an expression of my grief.
I appreciate the chance to shift within this community. Thank you.