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.

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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
 
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The best advice I received on this subject so far has been to say 'thank you' instead of 'I'm sorry.'
(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.
I *am* sorry ....to be in body that doesn't work like it used to!

'I'm sorry you had to wait. My body flared unexpectedly today. You are important to me, and I enjoy our time together, and I have few things I can enjoy, so I am using all my might to meet you while carrying my increased symptoms. Thanks for being patient and staying in contact with someone who has abilities that vary from day to day, because most people just distance from me.' (I think its not personal; I think its because they don't want to confront that they too could be impaired some day. And that they just don't know how to interact with this new version of me)

PS I am grateful that earlier in my life I did get to take for granted the freedom of being able to use my willpower to do things; and be able to recover quickly. Many only know an impaired life from childhood.
 
Holy cow. I just stumbled upon this thread and discovered there are posts here from more than a year ago that I had not seen till now. I will proceed to respond to them now. And I will NOT apologize for missing them! Though that is taking a bit of a struggle to not do it.:)
 
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!
Likaloha,

It's tough to be a pleaser. I sympathize. Limiting your interactions to those who understand sounds like a very smart move. Thank goodness for the people in our lives who understand and don't put unhealthy pressure on us!
 
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:

View attachment 40095

(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.
Rebeccare,

I whole heartedly agree. Sometimes it's a matter of knowing how to say what we are trying to say and if all we're used to starting out with is "I'm sorry" it can be challenging to figure out what to say instead. Starting with Thank you is a beautiful beginning. Changes what comes out completely, yet is still authentic and acknowledges that they had to wait or whatever. But without guilt and shame. Just appreciation. And they appreciate being appreciated.:)

That comic is a great help, using just a few words with some visuals for those of us who just don't know what to say without apologizing.:)
 
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.
Pearshaped,

I agree, some people do expect you to say or be sorry. I think though that whether they are ok with having helped or whether they are not, s their issue. Not ours. We know what we can and can't do.

Burden? The biggest burden in it all falls upon us.

I think it's ok for us to get out from under the layer of guilt and apology, and wondering how people are reacting. I think it's ok for us to acknowledge our limitations, and the ways we may be inconveniencing them or hindering what they want or need ... without apologizing for things we can't help.

I hope you are not having to deal with too many people who put you in such uncomfortable types of situations.
 
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.
Anncomingtogrips,

I have been there, and I feel your pain in having to downsize your life from things that have mattered so much to you. I woke up to a nearly empty email Inbox today and felt a mix of relief and sorrow. I know you can relate to that.

I understand your anger that people don't understand just how bad things are, because if they weren't so bloody terrible you would not be down-sizing at all. But they don't understand. And so we don't get that acknowledgement from the people we have worked with and spent time with ... and that just makes it harder.

We ARE sorry for the turn our lives have taken. but as you say, it is grief. And we do not have to apologize for that either.

I'm more than a year late with this! but let me say that this community welcomes you to its fold. I hope in this past year or so that you have been able to settle in here.
 
I *am* sorry ....to be in body that doesn't work like it used to!

'I'm sorry you had to wait. My body flared unexpectedly today. You are important to me, and I enjoy our time together, and I have few things I can enjoy, so I am using all my might to meet you while carrying my increased symptoms. Thanks for being patient and staying in contact with someone who has abilities that vary from day to day, because most people just distance from me.' (I think its not personal; I think its because they don't want to confront that they too could be impaired some day. And that they just don't know how to interact with this new version of me)

PS I am grateful that earlier in my life I did get to take for granted the freedom of being able to use my willpower to do things; and be able to recover quickly. Many only know an impaired life from childhood.

YesM

Gotta agree, we are all sorry for our present state. Maybe that is grief though rather than apology.

I also am very grateful that I was in my 40's before I started getting sick, and had had years of marriage, motherhood, and a busy productive life under my belt before things started shrinking on me. My son got ME/CFS at age 16, and is now 31. He lives with me and his dad, and has never been able to do most of the milestones we take for granted. I am definitely the luckier of the two of us.
 
Reading this article, I realized that I could say (at least) two things rather than "I'm sorry."

One of them—"Thank you"—has been discussed at length.

The other—"This makes me sad"—is discussed less directly.

It makes me sad that my 21-year-old son has to stop what he's doing to bring me food. It makes me sad that I had to cancel that plan with my friends. It makes me sad, and I can tell them that, without apology.

Sometimes it makes me mad, too. I might be able to tell them that, too.
 
Reading this article, I realized that I could say (at least) two things rather than "I'm sorry."

One of them—"Thank you"—has been discussed at length.

The other—"This makes me sad"—is discussed less directly.

It makes me sad that my 21-year-old son has to stop what he's doing to bring me food. It makes me sad that I had to cancel that plan with my friends. It makes me sad, and I can tell them that, without apology.

Sometimes it makes me mad, too. I might be able to tell them that, too.
Hi CoolBreezes,

I'm glad you found that my article struck a chord for you. I think you really nailed things with your examples. And I am right onboard there with you. So many things make us so very sad. And boy there are a lot that make us angry.

Sometimes changing the words we use, to ourselves and to other people, can even open up some doors to communication too.