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

[Hoopoe]

From my observation of the people I know that want to start dating or try dating apps, many of them find it daunting. But when they go into it with support, let's say a friend group decides to keep each other updated on how the dating apps are going, it doesn't feel like such a big and scary thing anymore. The difference of just having support to fall back on, to know someone is in your corner if things doesn't go well, gives a lot of courage.

Thanks for your support.

Sadly I missed out on a lot of socialization due to the illness appearing at a young age and leading to isolation. It shows in my social skills, which have improved, but it would be easier to make progress if I didn't have to go alone.

I need friends and family that cares, someone to explore the world with, not psychotherapy.

 

[rainy]

It's a really difficult and unfair situation. And it's really frustrating that the therapist couldn't see that. They talk so much about how human connection is important and isolation is harmful.

And they talk (depending on their therapy model maybe) about how the relationship between the therapist and the patient, "unconditional positive regard" from the therapist, is supposed to be the most effective part of therapy. But actually just being kind and engaging in what we're saying is somehow not possible.

The "you have to take responsibility, you have to put in the work, I can't just wave a magic wand you have to want to get better" is just the classic victim blaming from therapists, in my opinion.

I sought out therapy at my absolute lowest, when I was very isolated and all I needed was kindness. And I was also met with this weird, constant criticism you describe. Like she wanted me to feel low about myself. It's really bizarre.

I feel like a profession like therapists should be very aware of what makes people vulnerable, and that some people have been dealt harder circumstances.

 

[Hoopoe]

I received support from family and friends, and their attitude was so much better. They said they're proud of me, that I'm doing well given the circumstances, that I'm okay the way I am, that I can do even better.

The therapist was so negative in comparison. She tried to find fault and blame me for a lot of things.

I went to therapy, I believe, hoping to find warmth, support, human connection, understanding. The long term goal was a social life. Back then, I lacked people in my life that could give me this kind of support, so I turned to therapy. Now I have more social support and therapy turned out to be useless.

 

[Concentric_Spiral]

Sorry you were treated so poorly. There are some very bad therapists out there. I've struggled with the notion of what I am responsible for with respect to my health throughout the last nine years of having moderate ME/CFS. (With some periods of mild I guess? I'm still hazy on the classification. I've been unable to work, read for long, study, etc., during this period, but I could go for a 15-20 minute walk every 3-7 days for many years.)

Since four GPs and an internist had nothing to offer me (including a diagnosis), I spent many years trying to find the most 'evidence-based' naturopaths / 'unorthodox' doctors to help me. I spent a lot of money on all kinds of supplements as part of various protocols that I scrupulously complied with. I followed an increasingly 'clean' and strict diet, and tried all kinds of diets that I was told could help (Wahls, bone broths, etc.)

I focused on doing everything that could even notionally improve my wellbeing: following as much of a daily routine as I could; doing mild stretches and a few core strength exercises; doing short meditations whenever possible; being mindful of 'ruminating' and unhooking from it as often as possible; going to sleep early and practicing good sleep hygiene; trying to establish an online peer support group for emotional support; etc.

And I felt guilty and complicit in my poor health whenever I deviated from perfect adherence to all the things that were supposed to improve my health. E.g., when I ended up smoking weed to alleviate the tedium and isolation, or when I didn't go to sleep early all the time, etc. Or when I used coffee and weed to play video games when the inactivity and 'cabin fever' drove me insane, followed by inevitable crashes.

I have still not been diagnosed with ME/CFS, although my current GP told me she would give me a diagnosis if I need to apply for disability benefits, which I will only be eligible for once I have exhausted all but $5k of my savings. Looking back, having a bunch of bullshit provisional diagnoses (chronic Lyme, etc.), and holding myself more 'responsible' for my health than I actually was, gave me a fake but not unhelpful sense of control. Ironically, it also gave me something to do - comply with useless 'protocols'.

There's an old saying that having the wrong map is better than having none, because at least it conveys a belief that you aren't completely lost, which is terrifying and debilitating. There are obviously costs to having the wrong map though - financial, emotional, existential, etc.

I've been trying to find a therapist for roughly a year, and it's been a slog. Many of them feel like they can help alleviate my ME/CFS symptoms in therapy, even though I'm just looking for support with an impossible situation. All that to say the question of what it means to 'take responsibility' for my health and wellbeing is very loaded in my experience.

 

[Trish]

That therapist sounds appalling, @Hoopoe. You did the right thing breaking away. Have you considered making a complaint. She's probably doing it to others. But only do so if it won't cause you stress. You need to focus on your own health.

 

[Evergreen]

I'm glad to read you're no longer under that therapist, but so sorry you had that bad experience. You did very well to recognise what was happening and get out of the situation - not an easy thing to do.

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...

This has kept going around in my head since you shared it. I really think that people who grow up normally, without the health challenges that you faced, rely a lot on their peer group and their older siblings to figure things like this out. You don't have that peer group because of being sick during the years you would have met them. It's entirely natural that you feel the lack of that and don't know how to do certain stuff. I'm so glad your family and friends proved more therapeutic!

 

[Tree]

Sorry you were treated so poorly. There are some very bad therapists out there. I've struggled with the notion of what I am responsible for with respect to my health throughout the last nine years of having moderate ME/CFS. (With some periods of mild I guess? I'm still hazy on the classification. I've been unable to work, read for long, study, etc., during this period, but I could go for a 15-20 minute walk every 3-7 days for many years.)

Since four GPs and an internist had nothing to offer me (including a diagnosis), I spent many years trying to find the most 'evidence-based' naturopaths / 'unorthodox' doctors to help me. I spent a lot of money on all kinds of supplements as part of various protocols that I scrupulously complied with. I followed an increasingly 'clean' and strict diet, and tried all kinds of diets that I was told could help (Wahls, bone broths, etc.)

I focused on doing everything that could even notionally improve my wellbeing: following as much of a daily routine as I could; doing mild stretches and a few core strength exercises; doing short meditations whenever possible; being mindful of 'ruminating' and unhooking from it as often as possible; going to sleep early and practicing good sleep hygiene; trying to establish an online peer support group for emotional support; etc.

And I felt guilty and complicit in my poor health whenever I deviated from perfect adherence to all the things that were supposed to improve my health. E.g., when I ended up smoking weed to alleviate the tedium and isolation, or when I didn't go to sleep early all the time, etc. Or when I used coffee and weed to play video games when the inactivity and 'cabin fever' drove me insane, followed by inevitable crashes.

I have still not been diagnosed with ME/CFS, although my current GP told me she would give me a diagnosis if I need to apply for disability benefits, which I will only be eligible for once I have exhausted all but $5k of my savings. Looking back, having a bunch of bullshit provisional diagnoses (chronic Lyme, etc.), and holding myself more 'responsible' for my health than I actually was, gave me a fake but not unhelpful sense of control. Ironically, it also gave me something to do - comply with useless 'protocols'.

There's an old saying that having the wrong map is better than having none, because at least it conveys a belief that you aren't completely lost, which is terrifying and debilitating. There are obviously costs to having the wrong map though - financial, emotional, existential, etc.

I've been trying to find a therapist for roughly a year, and it's been a slog. Many of them feel like they can help alleviate my ME/CFS symptoms in therapy, even though I'm just looking for support with an impossible situation. All that to say the question of what it means to 'take responsibility' for my health and wellbeing is very loaded in my experience.

Hope you can find the right support. Is there a disability support group that can help you with how you can get a diagnosis?

 

[Concentric_Spiral]

Hope you can find the right support. Is there a disability support group that can help you with how you can get a diagnosis?

Thanks. My GP will give me a diagnosis even though she has zero knowledge of ME/CFS. Since there is no treatment, I haven't pursued it yet. Once I've exhausted my savings, I will ask her for a diagnosis so I can access (minimal) disability benefits here in Ontario, Canada.

 

[Sean]

Sorry to hear this, @Hoopoe.

This kind of sadly all too common abusive nonsense is exactly why patients should have the right to record therapy sessions, and to use them in complaints, disciplinary, and legal proceedings.

For medico-legal assessments a recording should be mandatory, and medico-legal evidence inadmissible without a clear complete recording.

The "you have to take responsibility, you have to put in the work, I can't just wave a magic wand you have to want to get better" is just the classic victim blaming from therapists, in my opinion.

Yep. The perfect excuse for their failure. You can never prove you are wanting to get better, or wanting to enough, and they cannot disprove it.

All we are left with is abuse of their illegitimate power over us.