Dealing with shame

[bspg]

My "shame gremlins" (what my therapist calls shameful thoughts) are having a field day today.

"The house is a mess!"
"Why are you in the couch? You should be doing something."
"You're not trying hard enough."
"You'll never be successful."

And on and on and on....

I've struggled with shame a lot throughout my life. The disabling nature of this illness makes it much worse. I feel that I'm able to manage it most days by being mindful of my thoughts and reminding myself that they're just thoughts, not reality. I'm sick, not lazy. Sick! Not lazy.

But some days those thoughts are SO FRIGGIN LOUD and I am overwhelmed with shame that I can't escape.

How does everyone here deal with shame? What are your coping mechanisms? What does shame look like for you?

 

[ljimbo423]

I feel that I'm able to manage it most days by being mindful of my thoughts and reminding myself that they're just thoughts, not reality.

I do the same thing you do with my intrusive thoughts. I label them as thoughts or sometimes I just say, STOP and that works. What I found often makes them much louder and worse, is fighting them.

Something else that sometime helps is distracting myself with my computer or TV. Hopefully this will soon pass for you!

 

[Learner1]

Think of it this way if you had a broken leg and were in traction or if you had food poisoning, would you feel guilty about those same things?:thumbdown:

In some ways, I feel blessed to have started into this phase of my life having had major abdominal surgery for cancer. No one expected anything from me, I was fighting for my life, and it really made me prioritize who and what were important in my life.

Now that the cancer is gone and I look healthy, its harder. I was so relieved when one of the first things a noted CFS specialist said to me was "It's hard for people to understand that you are very sick and not a slacker..."

I've learned I need to take care of me first and to fit the important things in with the energy budget I have. And it takes too much energy to feel guilty.

 

[bspg]

Thanks @ljimbo423

@Learner1 on good days I'm capable of rationalizing rest and taking care of myself. Today is not one of those days

I have a long and complicated history with shame because of things I experienced during childhood. This makes the bad shame days extra messy. Moving beyond shame is something I've been working on for the last couple of years but sometimes it's 2 steps forward, one step back.

I think for today, reminding myself that I'll be in worse shape tomorrow if I don't rest today, is helping.

 

[me/cfs 27931]

@bspg Thanks for creating this thread.

The shame thoughts have been much more manageable since diagnosis. Prior to diagnosis, it was very difficult not to feel constant shame. I've only been able to work a few years, with doctors repeatedly insisted there was nothing physically wrong with me. So I have decades of believing it was my fault for not being successful in life.

Getting correctly diagnosed helped far more with feelings of shame than any drug or therapy ever did.

I still have episodes of feeling inadequate in life combined with some anxiety. These attacks last a few hours and seem random with rarely an identifiable trigger.

Rest helps, but it's hard to rest during these episodes. Popping quercetin capsules and fish oil calms my brain down noticeably, leading me to believe inflammation plays a role. Cognitive coping strategies can help minimally. Mostly I try to remember it's just a temporary unpleasantness, and like @ljimbo423 distract myself until the episode passes.

 

[Shoshana]

@bspg Sorry you are dealing with that. It is VERY difficult.

Those thoughts SEEM so true, even though they aren't.


The house might be a mess, but there is a reason , and it is NOT because of any character flaw of yours!


What I do , when I hear those " old tapes " rerun in my head, and they SOUND like facts,

I ask myself when did I hear them, from who, and instead of then thinking about those bad early life experiences,

I realize and point out to myself,

that those people were incorrect!

In all cases, they didn't know anything about it , and little or nothing about me.

They were wrong. And it was long ago, when I was young, so I thought they knew more than me,
I believed them and I thought they were knowledgable and correct, about me,

but no, they did not know the truth.

Then, I write down the true statements about myself, and look at them on paper,
and re-read them a few times.

Such as :

I am a good person, who DOES try hard , and plenty,
I do try hard enough, more than many other people.

Its not my fault that I don't manage to do everything, no one does,
even ppl healthier thn me,

And I AM successful at many things, such as.... being nice to someone, .....etc....

What I Do is significant even though it is small-ish seeming things.
Some of them have great value.

(I repeat and repeat this. )

 

[Shoshana]

Yes, when we are tired or weary or in pain, the tapes run louder.

And also yes, that if it was some other type of illness or health problem, we would not put ourselves down so much.

And if it happened to someone else, we would not want them to feel undeserved shame.

 

[Starlight]

I'm sorry to hear that shame came calling today. He has no business calling at all.i don't mean this in a frivolous way, I think this illness is so so hard to just get through the day. I wouldn't wish it on anyone and I think everyone just getting through the sheer hell of it,the lack of understanding and the awful isolation it brings and all the other nightmares that go with it deserve a medal.Think about it that is what you deserve today. I often think it is about survival.I often listen to Tara Brach meditations.she knows illness herself and often talks of shame and guilt.i hope your beat those gremlins soon. Tara brach.com free to listen, she has a a good book called Radical acceptance also.

 

[bspg]

Getting correctly diagnosed helped far more with feelings of shame than any drug or therapy ever did.

Thanks @Webdog. I'm seeing Dr. Kaufman next month and I think having my illness validated by someone so knowledgeable is going to help a lot. Right now I only have a diagnosis by my PCP and it's easy for me to doubt her, especially when people around me are being skeptical of my illness and the shame gremlins are giving me a hard time.

I am a good person, who DOES try hard , and plenty,
I do try hard enough, more than many other people.

Its not my fault that I don't manage to do everything, no one does,
even ppl healthier thn me,

And I AM successful at many things, such as.... being nice to someone, .....etc....

What I Do is significant even though it is small-ish seeming things.
Some of them have great value.

@Shoshana Yes! These are all wonderful affirmations. I DO try harder than a lot of healthier people. I need to remember this.

I wouldn't wish it on anyone and I think everyone just getting through the sheer hell of it,the lack of understanding and the awful isolation it brings and all the other nightmares that go with it deserve a medal.

@Starlight We DO deserve a medal! And thanks for the suggestion; I am familiar with Tara Brach and do listen to her meditations from time to time. I'm also a big fan of Brene Brown's work.

 

[flitza]

@bspg Sorry you are dealing with that. It is VERY difficult.

Those thoughts SEEM so true, even though they aren't.


The house might be a mess, but there is a reason , and it is NOT because of any character flaw of yours!


What I do , when I hear those " old tapes " rerun in my head, and they SOUND like facts,

I ask myself when did I hear them, from who, and instead of then thinking about those bad early life experiences,

I realize and point out to myself,

that those people were incorrect!

In all cases, they didn't know anything about it , and little or nothing about me.

They were wrong. And it was long ago, when I was young, so I thought they knew more than me,
I believed them and I thought they were knowledgable and correct, about me,

but no, they did not know the truth.

Then, I write down the true statements about myself, and look at them on paper,
and re-read them a few times.

Such as :

I am a good person, who DOES try hard , and plenty,
I do try hard enough, more than many other people.

Its not my fault that I don't manage to do everything, no one does,
even ppl healthier thn me,

And I AM successful at many things, such as.... being nice to someone, .....etc....

What I Do is significant even though it is small-ish seeming things.
Some of them have great value.

(I repeat and repeat this. )

And how helpful it is of you to post about these personal feelings here! So that we, who share them, feel legitimated.

 

[belize44]

I struggle with the shame, too and as bspg said, most of this comes from childhood; having to shoulder too much responsibility too soon and then feeling guilt and shame if I didn't keep up with responsibilities that shouldn't have been mine in the first place!

What does shame look like for me? A messy house, because that was what I was most ashamed of as a child, when a stranger would enter, look around in disgust and I would just writhe with shame. So I get triggered by a messy environment. I am still struggling with resisting the urge to get out a broom or mop when I am so limited in what I can do before crashing, yet I still hear those inner voices saying that I am not really sick, that I am just lazy. Even though my husband does not mind vacuuming or washing dishes, I feel guilty that he has to work all day and then come home and have more to do.

The good thing though, is that it is getting easier to ignore the dirty carpet until it can be dealt with over the weekend, whereas before I would push myself to do it. Dirty dishes can soak overnight until I can do them the next day, but it still bugs me to see them sitting there. And a basket of clean laundry can be folded little by little, over several days and not put away all at once. I'm learning!

 

[Valentijn]

I have a list of priorities, and my health is always at the very top. This is an objective and sensible choice, because nothing else really matters if I'm not in good enough shape to enjoy a clean house, or even to walk through the living room to the bathroom. Hence it's easier to know that I'm doing the right thing by letting the mess wait - this is the procedure, and it's the most sensible one.

And I try to embrace my inner Garfield :

 

[erin]

House is untidy acceptable but dirty shame enters into my system. Have the home help today cleaning the house, but she has the cold! Very annoyed about this. You can never win with this illness. Last thing I want is another infection to catch. Rather have a dirty house.

Too late she's started cleaning, didn't sleep a wink last night. Very unlike me, i feel so unwell and the sound of the hoover is debilitating.

Shame finds me when writing these, that I have someone doing the job for me but I don't somehow appreciate.

Shamed as I cancelled my cousins visit yesterday, I probably won't be able to see her now until winter.

Can't plan anything, everything has to be spontanious. This does not suit no one. People don't live like this, they work hard, they don't have time in their hands.

I have the time but don't have the health. Most don't believe this as I look OK as far as they concerned.

Though I've lost half a stone for no reason. I can't eat much as I'm allergic to most foods now. I can't even eat bread and they don't understand. It's all in my head according to them.

 

[arewenearlythereyet]

I also had to deal with some pretty unpleasant times as a child. This was centered on me being ill (not CFS/ME) and experiencing quite a bit of stigma as a result. When you are 7 and you see teachers, doctors, children, children's parents acting like this around you it tends to make you reevaluate the behaviour of others.

I don't really feel shame any more for being ill or the effects of it...as long as I try my best and do what I can. Frustration at not being able to do stuff I want to do ...yeah heaps of that, but no shame.

Just remember a lot of what we feel as shame is actually what other people put on us.

 

[Marigold7]

I lived with guilt for 3o years when I was misdiagnosed as being mentally/nervously/purposely "ill" . Every guilt in the book was thrown at me. Including by Home Helps ... My mother thrust a letter in front of me, the glowing reference from the Vicar, demanding to know what I was doing with all that. Yes it echoes but no no need to cave in to it. I have never been a tidy person. Some folk are not. I now have a "spill room" where everything not is use gets.. spilled. And the door closed on it. There is only one room downstairs in the old cottage I currently rent; kitchen in the old Irish style. I now have THAT under control as the outside door opens into it, and I feel good about that. And my bedroom is copable,. I keep all bad thoughts at bay with gentle occupations like the knitting I sell for family working with poverty overseas. and books and my cats and here online. .. And no one comes here which is how I like it. And now I am very old and that helps too.. I "could" cave into it but I stick my chin out and say NO .

 

[Shoshana]

All such good posts....thanks to each one of you for sharing on this, and bolstering the first few of us who spoke of this difficulty.

@erin, NONE of that is your fault, of course!
It is so easy to see in others posts, that what they feel guilt or shame over, is/was not in their control and none of their fault.

Others incorrect thinking, that we are lazy , or not really sick, or not really trying, is not only false,
but also not our fault, that they don't correct their hurtful misinformation. It does effect some of us badly. And for a long time.

Working on it, gradually, can diminish it, at least some, and is worthy goal.

And realizing that though some of those people did mean a lot to us,
so we wish they would have understood and supported us more,

their hurtful conclusions were still very incorrect!


Loved @Valentijn 's statement of sensible priorities,

and the Garfield is so funny, on this topic.

 

[Marigold7]

Others incorrect thinking - that we are lazy , or not really sick, or not really trying - is not only false, but also not our fault, that they don't correct their hurtful misinformation. It does effect some of us badly. And for a long time.

And realizing that though some of those people did mean a lot to us,
so we wish they would have understood and supported us more,

their hurtful conclusions were still very incorrect!

Interesting angle BUT! I do wonder what we each thought of folk "like us" before we were ill?

I remember when I was at senior school, thinking similarly of one girl who would be absent yet we would see her out walking when we were on the bus going home. It was my big brother who told me off and informed me that she had terrible migraines way before I knew what they were like I met her just before she got married and she was terribly worried she would get one in that day.

I judge and blame no one. We have an old saying, never judge the way a man walks until you have walked a mile in his shoes. This illness has taught me compassion and forbearance. It is hard indeed to see ME in the same way as we see cancer and arthritis.

So many have terrible problems too that are not visible or apparent like my schoolmate.

Live and let live. Help where and how you can. Since I started doing this I never get bad reactions from others. Thanks as I have only just realised this! I expect nothing of others and get a great deal.

 

[belize44]

I judge and blame no one. We have an old saying, never judge the way a man walks until you have walked a mile in his shoes. This illness has taught me compassion and forbearance. It is hard indeed to see ME in the same way as we see cancer and arthritis.
So many have terrible problems too that are not visible or apparent like my schoolmate.

This reminds me of something I read in our local newspaper about some people in a housing complex complaining about a neighbor who has not mowed his lawn for a year, and how there are ticks and possums and things living in his yard, and how the foliage is pushing through the fence of his next door neighbor.

Reading all the complaints and indignant comments, the first thing that I wondered was if this person was ill and couldn't get to the yard work. And yet people find it much easier to be disgusted and judgemental. The newspaper article reported this person had been receiving citations from the city daily and that he wouldn't answer his door, but no one seemed to think that the situation was anything but deliberately done on his part to annoy his neighbors. For all they know he could unable to answer the door!

 

[bspg]

@erin and @Shoshana raise interesting points. A lot of the shame we feel (as humans) arises when we don't meet the expectations of others or the ones we've placed on ourselves. Throughout life, experiences shape us subconsciously and we form ideas of who we are supposed to be our how we are supposed to act. Oftentimes, these ideas are deeply flawed. Some examples:

We're supposed to be the perfect partner, parent, sibling, employee, and friend.

We're supposed to be happy, all the time.

We're supposed to go above and beyond in everything that we do.

We're supposed to have it all "together" and manage everything without fail.

We're supposed to be a support system for everyone and be there when they need it.

We're supposed to keep our house perfectly clean.

We're supposed to be productive at all times.

We're supposed to look a certain way or weigh a certain amount.

The list goes on and on. For me, this illness has rendered me unable to meet ANY of the above expectations. This has filled me with so much grief, anger, and shame over the years but it has also forced me to recognize how unhealthy and unnecessary these expectations are. Recognizing this is allowing me to unlearn these expectations, little by little, and replace them with healthy ones. It's definitely something I have to work at and practice constantly, but compared to two years ago, I'm a much stronger person, emotionally.

Examples:

I don't need to be perfect for anyone.

I'm a human being capable of experiencing a myriad of emotions. I'm not going to feel happy all the time and that's okay! Experiencing emotions is healthy and interesting.

I don't need to go above and beyond unless I want to. It's my choice.

I probably won't ever have everything "together" but that's just fine. Failure is necessary for growth and understanding.

I can only support others so much, and when I am able to. I have to take care of myself first.

A perfectly clean house is a house that's not lived in. I do what I can to keep things clean and that is okay.

There is no such thing as being productive 100% of the time. Rest and relaxation are necessary for health. I am the most productive when I listen to my body.

I look how I look and that's fantastic! I am unique and beautiful and allowed to take up space in the body I was given. I look good!

And my two favorites:

I deserve love and care
I am worthy

This illness sucks hard but I'm grateful that it has given me the time and space to learn and practice self-care. I think this is something that is severely lacking in (American) society and now that I understand the importance of it, I will never go back to being the overwhelmed people-pleaser I was before.

 

[bspg]

@belize44 unfortunately these are the consequences of an ableist society. The first assumption is that the person is just lazy, or an a-hole rather than maybe they're sick or need help.

Adding to this and @Marigold7's comment, I'm definitely not perfect in this regard. I've always considered myself a compassionate person but before I was sick, my first assumptions about people were often that they were just inconsiderate jerks. I feel like an inconsiderate jerk now for thinking that way, but growing up in an ableist society, I was completely blind to ableism and the ways it affects the disabled and/or chronically ill. Now I know the struggle first-hand.

Another silver lining in the dark ME/CFS cloud: I've become a more compassionate and empathetic person