Lived Experience Forum

[D1ng0]

I'm posting this during Insomniac Hours, so I imagine that nobody will see this for a while... but, when folks are awake, I need some support.

I am on my fourth physiotherapist. I am seeing them for chronic pain treatment, after being misdiagnosed and incorrectly treated by previous physiotherapists. Due to a reception stuff-up, my next appointment with my physiotherapist is over 100 days away. I will not have one-on-one physiotherapist support until then.

TW: Self harm, suicide.

Content/trigger warning

The prospect of going so long without physiotherapy support, after being in pain every single day for what feels like forever, is absolutely devastating. I rationally know that I do not want to die, but I'm having thoughts of suicide. It's as though my brain sees no other way to escape my pain, because nobody is helping me. And I rationally know that I do not want to be in more pain, yet my brain is also leaning towards self harm, as though that will somehow make the world care about me, as though I might make someone give a shit. It's sick and frightening and I hate it, but that's where my mind goes.

I'm angry about the failure of care. I'm tired of being in pain. I'm tired of my pain being taken seriously by me and nobody else. I'm tired of practitioners telling me that they will help me, only to hurt me later. I'm tired of people not caring. I'm tired of functioning and managing and continuing when it's this hard. I'm tired and I just want someone to help me.

[NatureLover]

Oh gosh, @D1ng0 , I'm sorry to hear! 100 days is way too long. Can you get in with another physiotherapist? 

So sorry to hear about your pain and your insomnia too 😢 and your SH and SI thoughts 😢

[D1ng0]

Thanks @NatureLover for the support. I don't think I can get in with another physiotherapist at the same practice. I'm also so, so exhausted disclosing personal details about my pain, mental health, physical health, medical trauma, etc. I don't know if I can do that all over again with a fifth physiotherapist.

Every time I see a new physiotherapist, I also need to do the work to ensure they're not transphobic, they will refer to me correctly, they won't ask inappropriate questions about my genitals, etc. I don't know if I can take the risk of meeting another shitty practitioner. I'm running out of hope.

Worst part is that there's been no apology for telling me I'd have to wait about a month for my next appointment, when in reality I need to wait much longer. The attitude seems to be "just deal with it". I don't know if my physio realises exactly how crushing this failure of care is.

I'd submit a complaint but I don't know if that will achieve anything.

Thanks for reading. I know I'm probably rambling. I just need to get it out. I hope you're doing okay this morning.

[NatureLover]

Ahhh, I seee @D1ng0  😢

I do empathise with having to explain one's conditions all over again to a new doctor. 

I am wondering though, could you maybe get on a cancellation list at that practice? 

[D1ng0]

@NatureLover They don't have a cancellation list. That's part of the reason I feel so hopeless.

The organisation's receptionists are also notoriously bad at reaching out to make appointments with patients. Part of the reason I'll be without physiotherapy support for so long is because the receptionist who was supposed to book my appointments never called or emailed, when they were supposed to. Then, when I called to ask what was going on and when I would have appointments, I had no hope of getting an appointment within 100 days. There's been no apology for that. It seems like standard practice to mess with patients that way.

So, I don't trust that I'll be contacted, even if I'm on a cancellation list.

I honestly don't know what to do. I'm so scared of starting over again with another physiotherapist, and not just for trans reasons. This is the fifth physiotherapist to shatter my trust.

[NatureLover]

So sorry to hear @D1ng0 

I don't know what to suggest for the best. I'm concerned about your SH and SI thoughts.

I know that it took me 18 years to find a good psychologist that suited me. I went through lots of psychologists in that time. It was worth it though, to get the amount of healing I've got through therapy since then. 

However, I don't have the trans issues that you do. I would like to suggest maybe writing it all out for a new psychiotherapist? But I'm not you, so please ignore if not helpful. 

[D1ng0]

Thanks @NatureLover. I don't need answers from you, that's okay. Practical advice and suggestions are appreciated, but mostly I just want to vent about the reasons I'm having such dark thoughts. I just want to feel less alone, and have others recognise how much of a healthcare failure this is.

Thanks for sharing that it took you 18 years to find the right psychologist. That does help with having perspective.

I usually do provide written summaries to practitioners, yeah. I'll do that again if I have to.

[NatureLover]

Sorry for suggesting things that you didn't need ro want, @D1ng0  😣

And yes, it is a big healthcare failure and I'm sorry. 

[D1ng0]

@NatureLover No, no, it's totally fine, thank you so much for your support. It's nice to feel less alone since I'm struggling a lot. And I'm relieved to have access to a space where I can mention these thoughts. They scare me a lot. I will be talking about it with my psychologist in our next session, but in the moment I just need to feel less awful, and I can't talk about (or even mention) suicidal thoughts with my family or friends. So, thank you.

[NatureLover]

OK, thanks @D1ng0  🙂

And yes, a lot of people can't cope with the mention of SH or SI. I wish people would educate themselves, but it seems to be too frightening or something. Maybe they would rather hold on to their stigma 😢

When do you see your psychologist next?