Sufferer My PTSD is from medical trauma, and I can't escape being retraumatized constantly.

[magnolia2224]

Hi all. I'm a young woman with many physical disabilities. I have a genetic disorder that runs in my family but no one knew we had it until two years ago when my health started going downhill and we had to go see a million doctors to try to get answers. I've always had the disorder, I was born with it (as were my mom and grandma), but for the most part I was healthy and lived a normal loving childhood, which is how I went undiagnosed. But then my body started falling apart and in the span of two years I went from studying abroad and hiking around foreign countries to being in a wheelchair unable to live independently.

That's probably traumatizing in and of itself, but to me the worst part was that doctors have treated me horribly. I got told it was all my head, or that it was my weight, or just "typical female problems," or that I just needed to eat healthier and stop being so anxious. One doctor threatened me and tried to get all my other doctors to take away my medication and refuse to see me as a patient, all while holding a copy of the test report with objective findings that showed I wasn't lying. I filed an anonymous complaint against that doctor, but then my anonymity was stripped away and I got a letter at my house with the doctor's words saying he was "sorry if my feelings were hurt" but that he told the investigators he'd done nothing wrong and so the investigation was closed. Blah blah blah. I don't mean to trauma dump here. Suffice it to say I've had shitty experiences with doctors in addition to some scary health problems that have permanently disabled me.

I was formally diagnosed with PTSD by my psychiatrist and therapist last year and have worked hard to try to improve. I am on prazosin which helps greatly with my vivid, terrifying nightmares. I know lots of grounding techniques for flashbacks and can identify my cognitive distortions and all that. I know my triggers, even if I'm not great at avoiding them. I feel like an expert at PTSD. Exaggeration. But I read a lot about it and really do try to put in a lot of work towards healing myself.

And yet... I feel like I can never heal. Because there's no "post" my trauma. I have to see doctors pretty much on a weekly basis, get blood draws all the time, have occasional surgeries, am constantly getting new imaging, etc. There's always a new specialist to see or a new treatment I need to advocate for. But I get absolutely terrified of all of it. It's gotten to the point where once a doctor told me I needed to go to the ER and I didn't go because I was so scared. I often push through and go to appointments, but then end up having a panic attack in the parking lot outside or deal with nightmares for the following week. Yesterday I read something someone mentioned offhand online and it triggered me so badly that I was a shaking mess for hours afterwards. Some doctors are good, but there are always more bad ones lurking and I know there's not a world in which I won't ever encounter a bad doctor again.

I don't know what to do. I've been in therapy for a year and a half and just started with a new therapist who specializes in acceptance and commitment therapy (ACT). But I'm not hopeful I can improve, because I can't change my current circumstances. I will always have to see doctors regularly, that's just how my condition works. So I don't know how I will ever get the space to heal.

Does anyone else have experience with things like this? I don't know how to move forward but I desperately want to. I just feel like I'm drowning. Thanks for reading, sorry for the ramble.

 

[Riley Jones]

Hello, thank you for sharing your story with us. I want you to know that you are not alone in feeling overwhelmed by your experiences with doctors and the ongoing challenges related to your health. It is completely understandable why you would be feeling the way you do, given the traumatic encounters you've had and the ongoing medical procedures you must undergo.

Firstly, I want to acknowledge the strength and resilience you've shown in seeking help and actively participating in therapy to address your PTSD. It takes a lot of courage and effort to work on healing from trauma, especially when faced with ongoing triggers and stressors.

It's completely normal to feel like there's no end in sight when it comes to healing from trauma, particularly when the source of that trauma is ongoing. Please remember that healing is not a linear process, and it's okay to have ups and downs along the way. Your willingness to seek support and explore therapies like ACT is a positive step towards finding ways to cope with your current circumstances.

You mentioned you're not sure how you can improve when you can't change your current circumstances. While it's true that you may always need medical care, there are ways to work on managing your fear and anxiety surrounding doctor appointments and medical procedures. Your therapist, especially one specializing in ACT, can help you develop coping strategies to navigate these challenges.

In addition to therapy, connecting with others who have had similar experiences can also be incredibly helpful. Myptsd.com has forums where you can interact with individuals who understand what you're going through and offer support and empathy. Sharing your story and hearing from others who have faced similar struggles can be validating and comforting.

Remember, healing from trauma is a process, and it's okay to feel overwhelmed at times. Be gentle with yourself, practice self-care, and continue reaching out for support when you need it. You deserve to find peace and healing, even in the midst of ongoing challenges. Thank you for sharing your story and reaching out for understanding.

 

[Sideways]

Welcome to the forum! That’s a lot to go through - hopefully the community here makes it a little less isolating.

If you haven’t already tried it, EMDR may be helpful, particularly to target the anxiety around medical treatment.

Hope things get easier for you soon.

 

[Midnightmoon]

Hi @magnolia2224 , welcome, though sorry you had to find us in the circumstances you are in

I really understand the medical trauma and ongoing fear of having to engage with a service that traumatised you. I sound similar to you in the sense, I was a young and physical healthy (ish) woman and in my mid 20s a then unknown genetic disorder nearly killed me. Medical error has meant I'm now a full time wheelchair user too, I have a muscle wasting disease and my legs are very much for display purposes only now!

I so admire your tenacity to continue to engage in a service that has caused you so much harm, that's huge, and a big one up to all the trauma response stuff that'll be challenging you every time you get in that building.

Have you had any help to process any of the stuff directly targeted at becoming disabled? Some hospitals do post trauma rehab groups, or skill groups (getting down and up a step in wheelchairs or opening doors etc, all these damn skills we didn't know we'd need!) that can help you feel more in control of 'you' now. Having the equipment that's right for you too, like wheelchairs are a huge spectrum, something young, active and quick can make a lot of difference to your head compared to something huge and bulky and 'old'.

Therapy wise, it's definitely a marathon not a sprint. Stuff shifts slowly, there's alot to process and being the speed of a snail is the way to go so it doesn't flood you anymore. EMDR is a good shout to have a go at if you feel ready to tackle some of the memories.

 

[magnolia2224]

Welcome to the forum! That’s a lot to go through - hopefully the community here makes it a little less isolating.

If you haven’t already tried it, EMDR may be helpful, particularly to target the anxiety around medical treatment.

Hope things get easier for you soon.

Hi Sideways, thanks so much for the kind reply. It means a lot to know there's a community of people here going through similar things. And I'll look into EMDR. Thanks for the suggestion, I really appreciate it.

Hi @magnolia2224 , welcome, though sorry you had to find us in the circumstances you are in

I really understand the medical trauma and ongoing fear of having to engage with a service that traumatised you. I sound similar to you in the sense, I was a young and physical healthy (ish) woman and in my mid 20s a then unknown genetic disorder nearly killed me. Medical error has meant I'm now a full time wheelchair user too, I have a muscle wasting disease and my legs are very much for display purposes only now!

I so admire your tenacity to continue to engage in a service that has caused you so much harm, that's huge, and a big one up to all the trauma response stuff that'll be challenging you every time you get in that building.

Have you had any help to process any of the stuff directly targeted at becoming disabled? Some hospitals do post trauma rehab groups, or skill groups (getting down and up a step in wheelchairs or opening doors etc, all these damn skills we didn't know we'd need!) that can help you feel more in control of 'you' now. Having the equipment that's right for you too, like wheelchairs are a huge spectrum, something young, active and quick can make a lot of difference to your head compared to something huge and bulky and 'old'.

Therapy wise, it's definitely a marathon not a sprint. Stuff shifts slowly, there's alot to process and being the speed of a snail is the way to go so it doesn't flood you anymore. EMDR is a good shout to have a go at if you feel ready to tackle some of the memories.

Hi, first off I want to say thank you so much for your kind words. I'm sorry you've gone through such similar experiences, but I'm grateful you're sharing them with me here because it makes me feel so much less alone.

I've never been invited to any hospital rehab groups or wheelchair skill groups (you're so right that there's a million skills you need in a wheelchair!). I think some of the difficulty there is that the gene(s) that causes my disorder has not yet been identified so no specialty will take me on. I often get denied from PCP offices for being "too complex" but then no neurologist/rheumatologist/geneticist/etc etc wants to manage my care. So I feel like I've slipped through the cracks in that regard. Thankfully my disease is not lethal and while the damage it causes to your body accumulates, it's not considered progressive or degenerative in the traditional sense that things like ALS are, for example. I can still walk, just not for very long as I dislocate joints every day.

I've actually done a lot of good work re: accepting my disability and all that. I feel confident being in my wheelchair: it's a pretty color, I've decorated with rainbow spoke guards, and I can move so fast in it. When I walk, it's slow and painful and awkward looking, but in my wheelchair I can zip around faster than the able-bodied people I'm with! And I'm lucky to have found other friends my age with the same disease, so they've been instrumental in supporting me and vice-versa. And to top it all off, I was accepted at a service dog organization and am going to be matched with a dog in the next year. I volunteer with the organization every week too and it's the thing that never, ever fails to make me smile, so I'm so excited to have my dog because I think it will help a lot with my PTSD too in addition to helping me with things like opening doors or picking things up off the ground.

Writing that all out, I feel like I have such a good life. And I truly, truly do! So that's why I really resent my brain sometimes. I have all these good, wonderful things, and yet every single day it poisons me and makes me feel like everything is pointless and that there's nothing good in the world at all. But that's the nature of the PTSD beast I suppose.

Thanks for the advice and encouragement and support. I truly appreciate your words so, so much.

 

[anthony]

I can improve, because I can't change my current circumstances. I will always have to see doctors regularly, that's just how my condition works.

Unfortunately, every single person with trauma works within this scope. Their current circumstances are post trauma, with no idea of what to do, yet lots of symptoms confusing the hell out of them.

Work with what you can change, not with what you can't. You will have to see doctors ongoing and your condition isn't going anywhere, being genetic and all.

So what can you do? How can you improve your view on visiting doctors? How can you change your approach to this?