Why chronically ill people should give each other medical advice:

I know that the topic of non-drs giving each other medical advice is a thing people are understandably sensitive abt, but I urge you to read through this thread and give it some thought before canceling me.

Chronically ill people often receive unwanted/uninformed medical “advice” from the unsick people in our lives. This is a microaggression that has caused a lot of trauma for a lot of people, myself included. This is not what I am talking about.

Chronically ill people also have an established practice of exchanging tips about what alternative/OTC treatments have worked for them. While I think this is Great, it’s also not what I am talking about.

What I am talking about is that if you have had the privilege of getting useful advice from your dr, I want you to spread that shit like wildfire. Because not everyone has access to the incredibly gatekept medical system. (This is a feature, not a bug.)

People living w/chronic illnesses often (read: usually) know more abt their diagnoses than their PCPs.

In fact, I’d argue that a person living with a chronic illness knows more about their chronic illness than specialists in the field. I have heard this sentiment from many disabled/chronically ill people including @JessicaOOTC

This is because a specialist on a specific chronic illness may have done 50 years of research on the condition, but ultimately, they get to go home at night. They do not have to spend all of their hours thinking about the disease. They do not have to live with it.

This is particularly relevant to chronic illnesses characterized by pain. Language falls apart when we try to talk about pain. I can describe to you what my pain is like, but I cannot use words to fully communicate to you what my pain is.

Even if I pinched someone with the amount of pressure I think is appropriate to cause the amount of pain I am experiencing, there is no way for me to adequately describe my pain to another person. Pain experiences are ultimately our own.

I suspect the same applies to conditions characterized by malaise or fatigue. People living w/these conditions can never fully describe their symptoms to people who do not have these conditions, even if that person is a doctor with decades of experience treating that condition.

This is a big reason why spaces like #neisvoid are so important. Spaces like this one give us (chronically ill people) opportunities to connect with each other. I can talk about nerve pain with other people who experience it, the only people who really know what nerve pain is.

How does this translate to us giving each other medical advice? We know what has helped us, and we are uniquely qualified to share our experience.

Of course, not everyone with the same chronic illness will respond identically to the same treatment. However, if you have ever tried to get treatment from a doctor (for anything), you know that it is a process of educated trial and error. It is extremely imprecise.

You try making changes to your diet, it doesn’t work. So you try meds, the side effects are awful. You try a new medication, it helps with some symptoms but worsens others. So you add another med, you have some side effects, but decide this is a livable quality of life for you.

I am not saying unqualified people should be allowed to prescribe meds or perform blood tests. Here’s an example: @sicc_bitch recently found out we have POTS, so we’ve been asking ppl questions to see what it’s like to not have POTS.

This led to me taking my heart rate seated, standing, and lying down. I told us what they were. Our response, “You have fucking POTS.” We sent me the diagnostic criteria and I met them.

One way of treating POTS is by consuming lots of electrolytes. We told me this. I’ve been trying it, and you know what? I’ve been feeling a bit better! I was unofficially diagnosed, I started treating my condition, and my health improved. All without going to the doctor.

Has eating lots of salt fixed me? No, but POTS can’t be fixed. It can sometimes fix itself with time, but a doctor cannot cure me of POTS, so why should I have to see one?

Why don’t I want to see a doctor? Because I am a poor trans disabled person of color with LOTS of trauma. Every time I go to the doctor, I have to consider whether it will be worth the money, spoons, and potential for abuse.

About a year ago, I had a pregnancy scare. I was uninsured. I was working a part-time minimum wage job. I had very limited access to transportation. So I mentally prepared myself to perform an at-home herbal abortion using a method I learned from a queer WOC.

I see a lot of ww on twitter talk about their experiences with medical misogyny. What y’all experience is real, and it is awful, but I encourage you to consider that access to medicine is in itself a privilege.

And when I say access to medicine, I do not just mean being able to afford and physically get to the doctor (although that is a big part). I also mean:
-being able to find drs that look like you
-trusting the opinion of a dr over the opinion of one of your peers

Once I decided to only see female doctors, that has been my reality, but once I realized that ww drs often treated me just as badly as male drs, I became aware of how difficult it is to find drs who are WOC.

And forget about trans drs. I have yet to meet an openly trans dr either as a patient or as a friend. And I interact with MANY trans people very often.

Regarding trusting dr’s opinions: I value expertise. I trust science. But I have repeatedly been misdiagnosed, gaslit, and straight-up lied to by drs to the extent that I must question every single thing a dr says to me.

I once had an hour-long conversation with a dr (who worked at a clinic for transgender medicine) about my gender identity, only to have him misgender me immediately afterwards.

I once had a dr diagnose me with borderline personality disorder and then:
-not tell me for a year
-forget!!!!!!!

When I asked him if he had diagnosed me with BPD, he had to go back through his notes from all of our appointments to check.

Hearing something from a fellow chronically ill person, even if it’s something they heard from their dr, makes me more likely to trust their advice, because they are telling me what worked for them. The information comes with their seal of approval.

This brings me to my call to action (kudos if you have read this far): I see a lot of people on twitter say, for example, that hypermobility and flexibility are not the same thing, and to make sure to tell their drs because they do not always know that. And that’s a good thing.

What I would like to see more of on twitter is more generosity of information. If you are an EDS patient with access to PT, share videos of your exercises, post tutorials of how to apply KT tape. Do not hesitate to share your knowledge because you feel unqualified.

If you are chronically ill, I see you as more qualified than most drs, and honestly even if I didn’t, you would likely be the most qualified person I and people like me have easy access to anyway.

If you read all the way through this thread, thank you, from the bottom of my heart. Also thanks again to @sicc_bitch for helping me edit this and for all the conversations we've had that led to these conclusions.

This thread also contains ideas from the book "The Body in Pain" by Elaine Scarry, which I only have second hand knowledge of via John Green bc reading is Hard with brainfog.