How do you recover from the trauma of systemic disbelief?

I feel like I'm struggling to have relationships because I'm unable to trust people. I always feel, in the back of my mind, that a person cannot be trusted and is dangerous if they don't clearly show understanding of my illness, believe me, accept my illness and show empathy.

If a person can do this, I can quickly form a friendship with them. But if they can't do this, it's extremely difficult for there to be meaningful intimacy and trust. Since most people don't understand ME/CFS it becomes very difficult to have any intimate relationships.

It must be the result of growing up with disbelief, some of it intentional (by doctors who believed in the functional disorder narrative).

How do you heal from this?

 

How trusting would you need to be to consider yourself healed or healing?
What would trust look like?

 

Maybe an intimate relationship needs a different depth of understanding, and that might take time to develop.

It's true that most people don't understand ME, but it doesn't mean they can't. Many of us didn't understand it either, even as we were living with it, because it tears up all the bloody rules.

If a person is open minded and really listens to you, it's a good start. A slowly developing friendship can be a good start. Getting inside ME is really hard, and people are likely to make mistakes. What really matters is how they deal with them; if they can realise they were wrong and admit it, that's growth. It's a lot more promising than superficial empathy.

I tend to trust people most deeply who're willing to be truthful about what they think and how they feel, even when they know it'll be difficult to hear. Maybe it'd be good to think about what you really value, what makes you feel you can trust people, and whether the ability to become friends quickly is a necessity. No intimate relationship goes anywhere without honesty and mutual respect, but a bit of grit and challenge isn't always a bad thing.


ETA: Also, we sometimes need to show things to people in several ways before they really understand. The more complicated it is, the more it's likely to need a bit of time, patience, and forgiveness.

 

Same.

 

It is a problem I often reflect on.

I have been fortunate to find a person who totally believed me from the beginning. Actually if I hadn't found him, I would eventually have stopped looking, I would rather be on my own than with someone who gaslights me (having had this experience with past partners and family). It is just too hard to build a relationship and think you are being gaslit every time you have an emotional reaction to something. That takes discussion and clarification etc, which I am just too limited in energy and cognition most of the time.

I found it very hard to trust my new GP until I knew she wouldn't offer some mind-body BS, GET, CBT etc. There were some tough moments over some of my medication (thyroxine) when she said you are going to take that amount no matter what I say! in a very annoyed manner. My response was I was happy to go and see the public endocrinologist who told me to take this dose! I am a very difficult patient due to being a doctor but we have gained trust and she is really supportive, and has many ME and LC clients on her books. I chose her because she is local, well versed on the NICE guideline and if I get very severe, I know she will do her best, with my partner also advocating for me.

If admitted into hospital, I would have to have a very severe illness and I think I will be too unwell to worry about abuse initially, it is only if they deny me treatment I think is quite reasonable and they call in a social worker or psychiatrist, I will then be asking for my support person to come in and witness interviews. I can consent not to see them and they have no leg to stand on but then you risk being labelled. Is such a difficult the situation we find ourselves in with this illness.

As for my wider social circle, it is pretty limited to a few friends and a couple of family members who really understand my illness and disability. I am housebound so don't really see many people and if I do, superficial conversation only. And I can't even do this for long so usually excuse myself. Most people can never get their head around ME and can't be bothered trying.

 

This is exactly what I mean. They don't even have to get it 100%, just show acceptance and make me feel like I'm welcome despite my problems. They don't make a big deal out of it, they don't think less of me, it's just one of life's challenges to them. They might even respect me for having to deal with such a big challenge.

 

Until recently there was not single person I know who would accept ME. I decided it was all too hard and cut ties with the only friend I had who talks about mind/body stuff all the time and was impressed when she did the Lightning process years ago before I had ever heard of it.

When I was first diagnosed in the mid 1990s, my family and friends decided that I actually had Borderline Personality Disorder despite the fact that I don't come close to ticking a single one of those boxes. They also labelled me with OCD because apparently I put plastic bags over things on the top shelf in the kitchen. This was quite a long time before everyone started realizing it would be wise to re-use plastic so I would occasionally wash them to be used again. My son only asked me about this recently, 30 years after they 'diagnosed' me. He looked suitably embarrassed as we looked up at the small plastic bag hanging over the radio antenna to dry

Not long ago, and with trepidation, I brought up my ME and FM diagnosis with my GP of 20 years. I didn't know what she thought but at least she didn't roll her eyes. Now her husband, also a GP, has long covid and is severely restricted in his work and life. Recently she discussed it with me as someone who would understand so I now know there is one person who will take me seriously.

Not long after that I visited my dermatologist for some rosacea follow up. He decided that I have neurogenic rosacea (some redness that can be controlled with a laser in my case but burning is my main symptom) and somehow the topic of other symptoms came up. I took the plunge and mentioned FM, PN and general pain and he nodded a lot in understanding. Apparently he sees a few new rosacea patients each year who describe the same things as I did. There was absolutely no indication that he thought any of it was in any way psychogenic although he suggested very low dose amitryptaline because he said, although it doesn't decrease pain, it seems to make the sensation of it a bit less intense. I might get around to it - again.

I don't think I will ever trust people with any of this information. I've been through enough disbelief and actual ridicule and I'm fortunate enough to be moderately, not severely, affected so I can cover it up and appear 'normal' if I have to.

 

How should one approach this problem?

I could take the position that the problem is me trying to adapt to a dysfunctional society that is ableist, ignorant, hateful towards the disabled. That I should learn to not seek acceptance, understanding, empathy from people who are unable to give these things, only to accept it from those few who are able to give these things.

Or I could take the position that the problem is an unmet emotional need, that I need to experience trusting relationships in order to heal. Once healed, I will be able to relate to a wider range of people without the burden of trauma constantly intruding into the interactions with others.

Or I could take the position that this emotional need is an impossible fantasy that I need to let go off. This sounds similar to the attitudes that caused the trauma in the first place ("your perception of reality is wrong and you should ignore your feelings and needs"). I'm sure the CBT folks would love it.

 

Humans are a social species. We have to have each other.

This is why having ME and other sicknesses or impairments that confer disability status on to a person, that physically restricts interaction with others or that is another condition and state of being that others in the society are overwhelmingly likely to shun, can too often lead to utter desolation physical deterioration and death or suicide.

As long as you believe that there are people with different feelings towards disabled people and diverse non conforming experiences of life that don’t match with dominant societies expectations, people who value their fellow humans value those who exist in the world under conditions of hardship not valued by society as a whole, and you have the physical capacity or freedom or the cognitive capacity and freedom to learn how to recognise and seek out such people, there is no reason not to.

The difficulty with trauma is that it affects your beliefs in yourself so greatly that you don’t know how to recognise or bond with people who are non abusive or devaluing of your experiences and person hood.

I don’t think it matters how long it takes to practice and seek out people who will allow you to feel good about yourself and experience intimacy and connection. Still it’s never going to be easy. Social expectations are set very firmly. Yet if your boundaries are also set firmly you won’t have to experience so much heartache and emotional damage before moving on each time you have the disappointment of finding someone cannot accept you.

I very strongly recommend investigating and contemplating disability theory as a tool for reducing the harm you may inadvertently cause others due to your trauma and for nurturing and protecting your sense of self and seeing yourself a a part of community.

I don’t think you can ever heal from such trauma as this experience of yourself as unacceptable and unincluded but including yourself in something larger will turn that pain into a tool and precious knowledge rather that a vulnerability.


Probably you feel stuck because you rely still on the people who have doubted you and tried to force you out of disability and sickness or neurodiversity, for physical and financial support. I guess don’t expect yourself to move on from trauma at a pace in this situation.

Maybe start small trust that it’s worth making superficial connections in order to build up your sense of yourself as someone who belongs in community. Then you can make low stakes mistakes on who is good person to invite into your life. Build up from there.

Having any relationship at all after such adversity will inevitably be painful, but there is a line, what is humans accidentally triggering pain and what is control and abuse. I think you will know the difference and you have the privilege enough in your background to leave the latter behind for your chosen relationships if not your existing ones.

 

A few weeks ago, I met the same woman on two different occasions while I was at a bike rack. I was leaving, she was coming.

She was beautiful and and talked a little bit, but I quickly became uncomfortable due to the trauma. There was nothing wrong with her. It was just the fear that she would quickly notice that I'm different and immediately lose all interest. Some people even become angry or begin treating me poorly.

I felt bad for not being able to respond to her curiosity and have a normal, pleasant conversation due to this trauma injecting itself into every interaction with other people. She deserved better, I didn't want it either, but my behavior is affected without me being able to prevent it.

 

That’s exciting news @Hoopoe!

You can do it

 

Don't read too much into it, it just means a lot to me because I'm not used to these ordinary experiences.

I also cried at home when I got my first (in 20 years) warm hug from a very kind woman. I think it was the pain of not receiving this for so long.

I'm also wondering how my autistic tendencies are affecting things, making everything more intense, so that I can easily reach a point where I can't process what is going on and just need to step back. Or maybe that's actually the ME/CFS.

 

I’ve not met you in person and I’ve not lived your life so this just a slightly educated guess, as I’ve known closely people with ME and also known Autistic people.

Might be unhelpful so ignore if so.



I think if you’re cognitively affected by ME conversations are difficult on a practical level, also physically to get the words out. Overall exhaustion can prevent communication.

But in a case where you feel pretty well at the time that’s unlikely to be causing you immediate aversion or fear or inability. You can probably count this one the very least of your problems.

Trauma is inextricably intertwined with Autism because presenting as your authentic self will show you to be different from the non Autistic majority and very often that display of difference is punished.

It’s highly unlikely that that would happen here either you’ll get on or have a temporary moment of awkwardness. So this more a past haunting.

Autistic overwhelm is a real thing though. So maybe experiment with what helps others with that.

 

It must be incredibly difficult. Do you have access to a counselling service where you'd be able to work it through? It might help you develop some strategies.

I usually assume people are okay until they prove otherwise. The majority really are, and the ones who're not fall into two broad groups: those I'll take pains to avoid, and those who can be arses at times, but you can grin and tell them to their faces that they're being arses.

I can only deal with people like this because I don't have a gaping wound, though. Needing to protect a wound changes everything, and it might help to explore that in a safe space.

It makes a huge difference. I always had to take relationships really slowly because I'd get completely swamped by emotion in the early stages. I eventually learned that I had to tell people as soon as I could—not that I was autistic, I didn't even know that myself, but that I'm easily overwhelmed. At one point I used to say I got Tango'd, after the TV ad. I remember the first time a guy got it, and told me he spotted it because my overactive face went blank.

It helps if you can find light-touch ways to describe things. At one point I was seeing someone I worked with, and there was a senior manager who was known for his ridiculous management-speak. If I needed an emotional timeout, I'd mimic his expression and posh accent and say "Can we park this for now?" It worked, but to begin with it sometimes frustrated my boyfriend. I realised it was partly because I was leaving it to too late in the conversation, and it helped if I spotted the warning signs and stepped back earlier. By that time I'd usually know what was going on, so I could prepare for it.

 

Yes, but I don't fully trust them either because I can't tell what they believe with regards to ME/CFS.

This problem is affecting, to various degrees, most interactions I have with other people.

 

Tell any person you’re causally chatting with that you think you might want to get to know a bit better and hang out with on a semi regular basis or to date that, apologies if you’re a bit awkward, you’re a little out of practice having conversations because you’ve just recovered from a long stretch of illness that kept you in convalescing.

Now it’s inappropriate to discuss your health in detail with people you don’t yet know well. So keep it general.


Oh dear they’ll say, are you okay now?
Much better thanks.
What was it?
We don’t know.
Did you see a doctor?
Yes.
Are they treating you?
No.
(They don’t know what it was.)
Is it depression? (insert other mental illness as relevant)
No. It was physical.

Okay on to the next subject.

Don’t see any way round getting to know someone a little bit before feeling comfortable with being a little more direct about yourself and your experience given the nature of your experience in life, and then potentially uncovering their prejudices re ME or neurodiversity. Trauma too.

Unless you are okay with telling everyone on first meeting about your stigmatised identities, if so then can rip off the band aid and avoid wasting time on people who wouldn’t be assets to your wellbeing.

But you’ve got the problem of having told people that, it can slowly become public knowledge extra people will randomly, friends cousins dad, lecture you having a PMA and trying this new thing or whatever just not being who you are.

It’s a genuine dilemma. But it’s also a luxury for people who don’t present as physically disabled. You may be able to opt to take a breather on being a target.

 

Thanks this has been very useful.

I find it relatively easy to analyse my situation and gain insights. The hard part is translating them into lasting change in my life. I don't actually have any strategy for that other than just writing them down and trying to remember to do things more in a better way than before.

 

I know you are