Let's talk about taking responsibility and living with a chronic disabling illness

[Hoopoe]

I realized that I had a negative attitude towards the idea of taking responsibility because I associate it with ideas like "overcoming the disability" and the misperception other people have that I could control the situation but choose not to... roughly the opposite of acceptance and adapting to the illness.

It's seems to me very similar to the idea of "internal locus of control" which is a cause of significant suffering when misused. In reality there are so many things which we have poor control over, and it takes more than a certain mental attitude to be actually able to exert control... knowledge of the problem and the solution. Taking responsibility can become a meaningless word of encouragement, not much different from "just solve your problem". If I can't solve a problem it's probably not because I don't want to, but because I don't know how.

One could also expand the idea of taking responsibility to include acceptance of one's limitations and doing what is possible.

Maybe my view is limited. I'm curious what you all think about this topic.

 

[shak8]

In which areas of life does the concept of "taking responsibility" weigh heavily?

 

[Hoopoe]

In which areas of life does the concept of "taking responsibility" weigh heavily?

Having some support in some areas of my life would be helpful, but this seems to be considered inappropriate or immature.

I have interacted with people who seem to believe that taking responsibility is a solution for every problem and they don't like my attitude. I feel like I'm being criticized for saying I'm disoriented and don't know what to do, having someone with more experience show me how things work would be nice.

I also remember very well how I tried to "take responsibility" for my illness in the wrong ways and how it caused a lot of problems. The intention to fix a problem isn't enough, there also needs to be competence and the means to succeed.

I'm trying to figure out if they have a point or if they're just ignorant about my reality. I suspect they are wrong but am not sure in what way. Maybe they assume I possess competence and means but lack of intention.

The internal locus of control thing is also very neoliberal... one can see how it serves the purpose of deresponsabilizing the healthcare system and shifting responsibility towards patients, even if it is a lie to say that patients could control the illness and recover if they wanted to.

 

[Hoopoe]

Two notably contrasting events that occurred in the last few weeks:

Two people proposed taking responsibility as the right approach to my problems. I felt like they could not understand my situation well and were judgmental. They came across as immature, but I accept that they might have a point.

A different person said I'm okay the way I am, the illness is not my fault, I'm already making a good effort, my life has meaning even if I can't do much with it. That felt very good... I felt seen in the context of my struggles.

 

[bobbler]

Ooh this one is a classic riddle I've come across too

I haven't unbundled how to explain this one but it feels like there is a difference between 'being a responsible person' and what multitude of ambiguous terms could be intended by the term 'taking responsibility'.

One obvious example is things like we see in TV shows where someone for example might be a surgeon and as they age develop a shake in their hand or eyesight problem, maybe they even could be eating, drinking or behaving 'more healthily' as a contributing factor. But because the solution/outcome from a safety of those on the operating table point of view has to prioritise and involve them removing themselves/being removed until proven safe the answer to those two things can be the same thing.

But if someone started to reframe what that 'best outcome'/most important thing should either be or look like then I can imagine all sorts of problems. Some old shakey surgeon thinking they are doing the right thing by soldiering on or not seeking/accepting help from the OH department ordering special glasses or equipment to make them safe eyesight-wise or adapting their job.

Of course the fun bit is there are a lot of scenarios where even outside of the context of ME/CFS or even illness people have been either 'made responsible for' and/or 'had to take responsibility' for something that they neither cause nor should be responsible for. It can end up being quite a 'small p' political term.

I also note when looking up definitions even just via google type responses then the word 'outcome' comes up. Which is where things seem to meld with the type of people who think that disabled people are responsible for 'being the problem' simply because they 'have the problem' and yes those who use words to convince themselves of reality have been heard to use these types of out loud thinking.

These people forget that you can only achieve [or select, if it is a pros vs cons scenario] the 'best available outcome' from choosing the 'best available course of action'. And seem to confuse it with requiring 'how' it is done.

I can't help but feel it smacks of behaviourism where striving to 'ape normal' supercedes good outcomes under the fallacial presumption 'good outcomes come from aping what those said person has claimed are normal, which at best is based on 'most' (remembering the classic error of assuming because the ave iron/ferritin for women is lower than men then that must be healthy)'.


It probably also relates well to that well used example of "it's not the wheelchair that is the disability, it is the environment" and everyone taking a moment to think of why each time someone chose to put a step in rather than a ramp that was chosen as the default (because it was easier for the person putting it in? is it actually cheaper or would ramps be cheaper if they were more common and costs go down with numbers done etc?). Sometimes it might sadly just be a bump that needn't be there causing a blockage that has no good reason for it at all other than 'didn't realise'.

 

[Kitty]

What an interesting question. I don't think I've ever encountered it on a personal level (I associate it more with certain political views), but maybe I haven't fully grasped the meaning or implications.

 

[Trish]

Having some support in some areas of my life would be helpful, but this seems to be considered inappropriate or immature.

Surely recognising your need for support is a very positive and responsible thing to do. Not immature at all.

A different person said I'm okay the way I am, the illness is not my fault, I'm already making a good effort, my life has meaning even if I can't do much with it. That felt very good... I felt seen in the context of my struggles.

Listen to that person. The other one hasn't a clue.

 

[Evergreen]

Listen to that person. The other one hasn't a clue.

What she said.

Based on the evidence on this forum, @Hoopoe, you are on a roll at the moment, taking your driving test, exploring dating, studying (hope I'm remembering right that they were all you). You are doing a fantastic job - those are enormous leaps for someone whose life has been derailed by chronic illness. Keep going and ignore the numpties.

 

[MrMagoo]

So I do think that the issue is semantics. Some people are using a word in one way that isn’t the same as another person would use it.

To take responsibility seems to mean you should change your illness/not be ill. Well we know that isn’t possible.

Let’s think about the opposite. What does it look like if you don’t “take responsibility” for ME/CFS?

For me, that used to be “f it I’m going on a night out” followed by a hangover and a week of pain and exhaustion. Now it might be “I want to go shopping” also followed by a day or two of agony.

Being responsible is not doing too much. Not making myself worse.

I used to be criticised at work for my lack of “resilience” well that was because I was exhausted, I couldn’t cope with a few extra tasks, covering someone, an urgent problem.
Yet when Covid came and we were locked down I was severe. I coped fine, in a lockdown, alone I was mentally able to cope. While all around me showed their lack of “resilience” because they had to stay in their home.

 

[shak8]

Do most people have the experience, intelligence and empathy combined to comprehend your unique POV, your subjective experience?

(Consider the source. If you admire the values of someone, and other qualities, then I think their deep opinion about what you tell them of your situation MIGHT have some validity if only to open the path a bit. There is no one "truth" out there. Everything is filtered by an individual's genetics/upbringing.)


If the responses are from others in a group therapy setting....perhaps the individuals there haven't the capacity at the moment for much deep reflection about your concerns.

They're too deeply enmeshed in their own problems, or lack life experience to be objective, much less empathetic. That said, there is much value in verbal expression of your life story.

 

[Hoopoe]

Do most people have the experience, intelligence and empathy combined to comprehend your unique POV, your subjective experience?

No, but knowing this on some rational level is different. Living with disabling chronic illness destroys one's sense of self as a capable person with a unique identity and so my initial reaction tends to correspond to that self image. It means having a habit of being skeptical of the idea that I might posses qualities, be more capable of others in some roles/situations, might have a valid point of view, etc.

I was astonished when I realised that I was much more mature, in some specific ways, than other people. It didn't correspond to the image of myself that I had and I wasn't sure what to do.

When I worked as bartender for a day I also discovered something new. In that role, one must be welcoming, respectful and attentive to other people's needs. The interactions were warm and people grateful for the service. I quickly learned that role from the lady from the catering service and I never experienced myself in that role before. It was easier than I thought (the work was also draining).

A part of my rehabilitation involves rebuilding that sense of self myself as a person with agency and various other qualities. When I began being able to do long walks, I realized that I could actually visit new places, not just fantasize about doing it. It was mind-blowing.

The first time swimming, after many years, was almost a spiritual experience. I discovered that there exist pleasant, good experiences out there. I come from a state of deprivation and inability to do almost anything without suffering that has lasted so long that I've forgotten what normal feels like.

I've not yet had the impression that anyone I've interacted with can understand these experiences... they're just too alien.

 

[Hoopoe]

Another experience was a woman trying to flirt with me. I was stunned and did not know how to react and felt insecure about not being "normal".

I'm also struggling to build social life for myself. It's difficult for me to relax and enjoy myself, have nonserious interactions with other people, laugh about silly things. In part because of the symptoms which are still present, but in large part because I have not had the opportunities to preactice these things and my life has been serious and hard.

I brought this up in a conversation with my therapist and said it would really a help if someone could show me what kind of settings, hobbies, activities, places would be good for me to find people of my age, make friends, develop social skills, learn how to have fun, just showing me how things are done. That's were I got a "take responsibility" comment because apparently this is considered an inappropriate request that reveals a bad attitude. But asking for help because it would be useful is a form of taking responsibility...

 

[bobbler]

Just to add. Sometimes people give advice just for something to say and/or thinking it is kind or helpful, and yet they actually haven't spent any time thinking on it at all and normally have simplified the problem (or not bothered to even think whether the problem is different to the one they are giving an answer to) ie its naff advice because they are being a bit lazy and just trotting off pat phrases they would say to someone else

I've noticed most people can't even be bothered to start imagining the complexity of problems that we solve on a daily basis and just bodge their way through life, and I guess it is something most mainly learn only when they have to

I'm now probably going to sound obscure with my next analogy as I haven't worked out how to explain the connection but I had one friend who when it was birthdays or xmas used to buy me presents that (even another friend picked up) really weren't 'me', but were for example things that they really wanted or would wear themselves.

It wasn't worth explaining and hurting them as we'd got to an old enough age that it was just something to accept in them, didn't matter as we got that the intention was kind and good, but I also wasn't going to by that stage go through the obligation of eg wearing it for a day to please them either or wonder too hard why they thought I would like it. It was probably a task they had ticked off as best they could to 'buy something nice' etc.


And then other times I've just noticed that there are a lot whose human instinct seems to be to judge others - but they tend to be the ones whose judgement is the most flawed as it comes from a different place that if I did judge someone (much more rarely, and after thinking 'why' a lot more deeply because I'm not seeking to judge) it would have come from.

 

[bobbler]

Another experience was a woman trying to flirt with me. I was stunned and did not know how to react and felt insecure about not being "normal".

I'm also struggling to build social life for myself. It's difficult for me to relax and enjoy myself, have nonserious interactions with other people, laugh about silly things. In part because of the symptoms which are still present, but in large part because I have not had the opportunities and my life has been serious and hard.

I brought this up in a conversation with my therapist and said it would really a help if someone could show me what kind of settings, hobbies, activities, places would be good for me to find people of my age, make friends, develop social skills, learn how to have fun, just showing me how things are done. That's were I got a "take responsibility" comment because apparently this is considered an inappropriate request that reveals a bad attitude. But asking for help because it would be useful is a form of taking responsibility...

I had a number of years where I was in the workplace and most had no idea how ill I was and that there was literally less than nothing outside of it for me (as I had to rest in order to work).

I remember a few times over this time period where I had to attend for say an hour some social thing after work (still at work but people I didn't work directly with there) and having really nice conversations with one person (different people each time as these were years apart) who I knew I wasn't 'interested in' at all, in the sense that I couldn't do dates, but was enjoying the one on one conversation with for a certain time. Partly because in groups I'm happier to just find one or two people to chat with.

And then because I always needed to go home after eg an hour as that was my limit before I knew I would start to sundown would just say bye and wander off home and got the sense that whoever I'd chatted to felt a bit like I would have said 'shall we exchange numbers' or whatever the latest thing is these days. Or some excuse. But as my situation would have 'outed me' to colleagues and wasn't something most believe ('honestly even if I did manage one date it might be another 6months before I was well enough to do another') and I had no practice or spiel, I just made my exit and felt a bit like I didn't know what else to do - but they might have been left a bit confused


I think that your therapist might have been 'projecting' to coin a term used on another thread (and to be a bit rude as I feel sad that they did that). I can totally understand why you would be surprised to get that response from them.

I think that this is a common area where yes a therapist or counsellor or mentor would be happy to help you think of these things particularly as you have also defined the list and you are asking for feedback for example on what might work or social catches or things you might not have had the chance to understand or work out how to manage - having some lines on certain things can be really useful to give confidence or not feel nervous if someone asks a certain question for example.

 

[Kiristar]

I've not experienced this directly. But I feel the turn of phrase "taking responsibility" is very "parent to child" in formulation and usage and seems to me to be tacitly blame orientated and passive aggressive.

To me it harks back to tellings off as a child or teenager and admitting when you have done something silly or naughty (or irresponsible) that you should then own and take responsibility for.

It doesn't feel very appropriate in an ME illness context at all. I would be quite offended if someone used that in relation to me managing my ME. But maybe over time after medical gaslighting I have become hypersensitive to potential criticism and others feel differently?

Eta I am referring to British English language where I feel the culture and language can tend to be passive aggressive and euphemistic to start with.

 

[Hoopoe]

I live in a different country and culture where expressions have slightly different meanings. Even if the literal translation may be the same ("taking responsibility") the meaning and the way it is used may be different.

Italians are very social and one of the most common relationship problems is affective dependence (not being able to tolerate spending time alone and not being in a relationship). One can see how "taking responsibility" might be important in this culture. That said, disabled people are very clearly often perceived as failing to take responsibility.

Presumably some of the things I said were similar to what people with affective dependence say, even if the problem is completely different. Sometimes it is difficult to communicate things in a way that leads to being understood and the desired outcome.

 

[Hoopoe]

All this said, I can also see how taking responsibility, in the sense of not relying on others for support, might just be the only realistic solution, simply because it seems difficult to find a person that I can actually rely on for this kind of support. Such a person would need to have very particular characteristics.

 

[JemPD]

To me taking responsibility is doing what I can to manage my condition as well as possible.
So for example not eating lots of cake if I have diabetes.

We are also responsible for getting our own needs met, such as asking for support when we need it, doing what we can. For example if a person had the beginnings of dememtia & had been advised to get assistance with their paperwork and not drive, then they are responsible for any motor accident they had when they ignored that advice, and are being unfair to loved ones who have to pick up the pieces of their admin errors. Thats not 'taking responsibility' imho.

Personal responsibility means i do what i can, i do my bit to help myself to the best of my ability. I pace & avoid PEM where I can, i research my condition, i learn about it, i try to help myself by researching the evidence based treatments. Rather than just doing all the stuff that I know makes me worse (assuming i have a choice whether to avoid it, and then expecting someone else to inconvenience themselves to help me.

It's the difference between doing out part to the best of our ability rather than sitting back & waiting for someone to fix us which would be a kind of 'victim' mentality.
Quite a lot of people seem to think that PwME have that victim mindset. It hurts. But, for most of us, and certainly from what I know of you Hoopoe... they are just flat out wrong.

I have interacted with people who seem to believe that taking responsibility is a solution for every problem and they don't like my attitude. I feel like I'm being criticized for saying I'm disoriented and don't know what to do, having someone with more experience show me how things work would be nice.

I also remember very well how I tried to "take responsibility" for my illness in the wrong ways and how it caused a lot of problems. The intention to fix a problem isn't enough, there also needs to be competence and the means to succeed.

I'm trying to figure out if they have a point or if they're just ignorant about my reality. I suspect they are wrong but am not sure in what way. Maybe they assume I possess competence and means but lack of intention.

I obviously dont know the people in question... But, dont forget that quite often people who think you shouldn't need support, who think you are not 'taking responsibility'.... who want to criticize & dont like your attitude.... sometimes do so because they want to avoid being the ones doing the supporting.

They want it to be a failing of yours (ours) so that they can avoid the guilt that comes from overlooking and not helping someone with genuine needs. It would say something negative about their character if they were to not offer support to someone with genuine needs...

So if they can turn it around on you & say, in some roundabout way, that you shouldnt have that need in the first place... that you're not 'taking responsibility to help yourself.... well then they are off the hook arent they... they can walk away and leave you to it with a clear conscience... because you're an adult & they're not responsible to help adults who could help themselves but are not doing so.

IMHO & experience, much of the time, the bottom line is simply that lots of people dont want to help, and are (oh the irony) unable to own that. They're unable to take responsibility for the fact that they would prefer not to be inconvenienced. They would be uncomfortable with that reality, so it's vastly easier to blame you.

It's also vastly easier to judge others from ivory towers of wellness & neurotypicality.
It also avoids them confronting the terror that would come from the internal acknowledgement that the next time they get a cold, instead of recovering within a few days, they might end up bedbound and unable to look after themselves. It's just too terrifying.
Of course they may just simply be ignorant & unaware & mean well, but just wanted to flag up the possibility that it's about self interest.

Perhaps I'm just in a ranty mood as a Dr made me reaaly mad today, apologies if this post isnt helpful, just ignore me. But honestly Hoopoe from what I've seen of you, you're doing everything you can to help yourself, youre being really brave & having a go, asking for help where you need it (which takes a shed load of courage in itself!!!).
So istm that anyone who criticises or makes 'take responsibility' comments is likely just ignorant, and/or just motivated by self interest (whether theyre aware of that or not).

Be encouraged friend, you are amazing, & just starting this thread to discuss it, is in itself 'taking responsibility'

Edited to change the word often to sometimes