Below is some info on how to talk to doctors and officials and navigate the medical system to get what you need.
Building Your Case
Seeing Doctors & Specialists
Prescriptions & Medications
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Building Your Case
See as many doctors as you can and let them see you on your worst days. It's better if you can get a psychiatrist and an MD in the mix. Try to see them even if you aren't doing meds. Their word holds more weight than social workers, therapists, naturopaths, etc, but having multiple people with degrees writing about you is the most important piece. Get as many of your experiences diagnosed as you can.
Frequent Appointments
Try to see providers at least monthly, more if you can, and varied doctors - see all the specialists, get all the referrals, get shit documented. The state really wants to see you "try" to become neurotypical/not sick.
Fibromyalgia/CFS diagnoses (and now Long Covid) probably need a Rheumatologist (the specialist for it) to diagnose in order to have weight; your Primary Care Practitioner or General Practitioner is not enough to validate your diagnosis, unfortunately.
Advocacy and Documenting Treatment Refusals
If a doctor gives you shite for requesting a specific test done: say that a confirmation of a diagnosis (via testing) will help you find community support/access to other resources you may not be able to access because you didn't have the diagnosis before.
Medication and Treatment
When visiting an MD or specialist, if you can, allow them to offer or even prescribe you a prescription for the disability, because 1) the doctor's ego won't get hurt, which is when they can harm your case by denying a diagnosis or allyship and 2) its GREAT to have medications listed on your case, whether or not you are CURRENTLY taking them. It even helps to show you have ATTEMPTED taking them in the past but had to get off of them because of conflicting symptoms (Ɣ’s situation)
If you can’t afford prescription medications to have on your case file, try to get donations from friends or something for even one medication, because that documentation can really help your case - it shows that you are “TRYING TO GET BETTER” and are actively working on “NOT BEING DISABLED” (Assholes. Ugh.)
Transparency
Also, be strategic about letting your doctors know that you are applying for disability. That almost bit me (Q) in the ass. For some reason, honesty can sometimes be read as that you might be faking symptoms/disability. On the other hand, I (Ɣ) talked to my docs up front, let them know that I was needing their support for getting SSI. if I didn’t feel they were on my side, I switched doctors. It was a lot of work and kinda draining to advocate and navigate a switch, but was worth it to find doctors who believed and supported me and would do or sign whatever was necessary (and legitimate) for me to get SSI.
Compliance vs Safety
The state wants to see you work with pharma (medications). But if that's not for you, having conditions that can't be medicated away helps (make sure to get them well documented). I (Ɣ) also got a lot of professionals to agree that gambling with meds could destabilize me and jeopardize my already precarious life. I also have trauma around meds that got documented—if you've had bad medication reactions let them know about it; if you need to stop meds, let them know. It’s important to have all of that documented, to show you are “trying” to get better.
Alternative & Holistic Medicine
The state doesn't give a fuck about holistic medicine (herbs, acupuncture, supplements), but your doctors and therapists might see you engaging in these things as being “a good sick person” and write about you favorably. And by don’t give a fuck, we mean it doesn’t carry much, if any weight in your case in terms of complying with acceptable treatment and validating disability.