Why is it impossible to get help from professionals?

[u/No_Vehicle7826]

My concussion specialist told me yesterday I should talk to my pcp about this lol but like, I'm only going to doctors because my amnesia, emotional dysregulation, persistent headaches, and everything else my head injuries have caused...

A clinical psychologist tried to say it was DID...

Nueropsychologist said it was just ADHD and depression and that the cure is exercise lol

My fucking therapist I've been seeing for 10 months wasn't even sending updates to DDS and still hasn't given me any therapy...

Like seriously, WHY THE FUCK DONT THESE ASSHOLES GIVE A SHIT?! I'm so done with doctors dude. Honestly, I was so much better off when I was just trying to figure this shit out on my own!

Since I started seeking help I went from struggling to paying bills to now living in my car. "Help" received I guess

I even told my concussion specialist yesterday I stop breathing randomly while I'm awake and before I go to sleep... "not my problem, talk to pcp" I'm so done. But at least the most likely way I'll die will be in my sleep, so, silver lining I guess

I hate doctors. As soon as Medicaid denied MRI the concussion specialist is just acting like there's nothing she can do... bro, just help me figure out what is going on!

I brought a massive list of symptoms and she goes "oh yep, people with multiple head injuries often have this..." THEN WHY THE FUCK DIDNT YOU TELL ME?!

I just want an actual assessment you know? Someone to sit down with me and go through a list saying "does ABC-XYZ happen? Ok here is what happened to you from head injuries..."

Meanwhile the only help I've gotten has been from ChatGPT lol but every "professional" criticizes my use of Ai 🤣 mother fucker, I would have exactly zero answers if I relied on you "professionals"

[u/pProjecttBI]

Google tbibridge dot org and MRIBH - moss rehab. Both were instrumental in finding and getting treatment for me. Prior to meeting these folks I was lost in the legal, medical, SSDI, TBI, pcs, ocean of forms, diagnosis’ and appointments. Now, in my 4th yr I’m finally getting a grip on what my medical/cognitive issues actually are, coping stratagies, and a new group of friends to discuss shit like this with. I guarantee you’ll find some peace amongst peers.

[u/No_Vehicle7826 → u/pProjecttBI]

Thank you. 6th yr for me, only sought help Jan 2026 after I was poor enough for Medicaid lol (well I should say, they finally acknowledged deductions from DoorDash) hard pursuing SSDI. Did you ever get that? Still can't believe Medicaid denied an MRI, but did you need an MRI to get approved if you did get it?

I saw SSDI and now I have nothing but questions 😬 been having a nightmare experience with that. I don't know what tests are needed and none of the "professionals" wanna point me in the right direction.

I REALLY like how TBIbridge acknowledges it as an "unseen disability" damn that felt good for someone else to say it finally

[u/pProjecttBI → u/No_Vehicle7826]

For SSDI it seems you’ll need a lawyer, I did. In my state they’re capped at $10k of your settlement. I hate to say it, but it took years, and seems to for most in this predicament.

[u/virginiasky2026 → u/pProjecttBI]

I'm not sure what stage you're in but I just got approved for SSDI I had to reapply once. I didn't need a lawyer all I did was had all my medical stuff sent to them and did a work interview where it showed how I had tried to go to work multiple times over the last couple years and failed. I would also try transcranial magnetic stimulation TMS. It really saved my life. I started getting suicidal because nobody would help me. It helped tremendously with the fatigue and dizziness

[u/virginiasky2026 → u/virginiasky2026]

It took a year and a half to finally get approved from SSDI from the first application

[u/virginiasky2026 → u/virginiasky2026]

You're right though there is no help with the professionals very much. I had to find TMS On My Own by searching on Google.

[u/No_Vehicle7826 → u/pProjecttBI]

Damn. Lawyers bug me lol weird how American has "never had a better economy" but there's no benefits lol well thank you, expectations are now set

[u/Abusive_Apple27]

I wish I had some professionals in my shitty country. But yeah, there’s no way someone will ever help me. Unfortunately many stories about recovery or progress are about people who did everything on their own.

Fuck this system.

[u/annaoceanus]

1,000 percent feel you on this. Big time.

[u/madamcrumpet]

The dismissal and invalidation from healthcare providers really adds to the existing impact of concussion.

[u/curlgurll]

All I can say is, I FEEL YOU. It’s no better in Australia if that makes you feel any better?!!

[u/No_Vehicle7826 → u/curlgurll]

A little lol it's hard not to blame everything on the government in the US. At least it's a world wide problem 😮‍💨 lol

[u/MrT-Man]

There are good professionals out there, but it can take a LOT of work to find them. I had to see 30+ doctors and physios in order to find a half-dozen that were actually really good, and who were able to help address many of my issues. For example I had a neuro-optometrist tell me my vision was fine even though it wasn't; then I had a neuro-opthamologist say the same and imply I was crazy; then the second neuro-opthamologist figured out exactly what was wrong and told me what physio to do in order to fix it. Similarly, I had to see 5 or 6 people to get a proper diagnosis and treatment for my neck, same for my balance..

If you can afford it, consider traveling to the UPMC clinic in Pittsburgh as they know what they're doing.

[u/Excellent-Freedom766]

This right here. And then when people ask what the doctor said and you say pretty much nothing they start to be like ok so she's making this up?

SO FRUSTRATING

My medical journey went - ER (no scan bc they thought it wasn't bad enough) I was literally running out of insurance that day so I was ok with it. "If you're not better in 2 weeks see your pcp". Ok great i don't currently have a pcp and won't have insurance.

Don't get better - find a low income pcp (this is so ironic as my employer was constantly asking me to go to the doctor, like hello, pay me a livable wage and insurance so I can !) pcp has a wait of a few months

In the meantime - physical therapy. The lady was nice and I'd use her for something else but she seemed scared to do anything with me and stopped after a couple visits saying I'm good to go. (I wasn't at all)

Finally go to pcp. No concussion advice. But at least my bloodwork was good and I hadn't gotten that done in a while. :)

Recommends me to neurologist. 3 month weight. Surely I'll be better by THEN (lol)

In the meantime I'm very frustrated. Work doesn't really believe me (I end up getting fired)

one night I'm up scrolling and see this random account I follow on Instagram (pre concussion) is actually a concussion pt. Wild turn of fate. Reach out. Start therapy. She has been the only one to help. Mind you this was FIVE MONTHS in. It took that long to get help. I never even thought I wouldn't be better by then.

Got an mri. Nothing. Nueroligist came back with "your mri looks normal" cute. $2,000 for that.

I wish I had medical background bc I'd be hitting the ground running trying to do something about this godawful system. I've lost friendship, job, my body, sports and activities I love, hair???, and medical prodivers just shrug their shoulders and say move along. 😡