Guide: how to seek medical care + treatment in the dystopian hellscape that is the United States
Updated: Jun 10, 2019
I will add to this guide as I acquire more spoons and knowledge! I hope this helps you.
Do you have insurance? If not, [article on insurance pending]. If you already do, keep reading below.
There are limited resources on how to get proper medical care. We are expected to learn how to do so from parents or other adult figures. The few resources out there don’t help much for people with undiagnosed issues.
I grew up on government health insurance; my parents were clueless on getting adequate medical care. Neither my parents nor my pediatrician connected the dots on all my symptoms. When I finally sought out specialist care, it took weeks or months to get an appointment, and when it finally arrived, the provider usually dismissed my concerns. Since turning 18 I have taken the reins on getting the medical care I need. In the last 3 years, I have also learned through trial and error what does and doesn’t help in getting adequate care.
Medical prejudice prevents marginalized populations from accessing medical care. [1,2,3] Women – especially women of color, LGBTQ+ women, and poor women – face nearly insurmountable obstacles to getting healthcare. [4,5]
Part A: Finding a doctor
If you already have insurance, congrats! You’re on your way. Now you need to...
Find a primary care provider. (If you already have one, go to step 2.) Primary care providers (PCPs) can be any type of doctor, but most people have general practitioners (GPs) or internal medicine specialists (internists). They are the sort of renaissance person of medicine: they know some of everything and help you keep your general health on track. Often, insurance companies will assign you to a PCP. If you don’t like them, you can always find a new one! (More on that below.) 1. Find a general practitioner 1a. Many insurance providers have lists of in-network providers. Don’t use it exclusively. These lists are often outdated, incomplete, or just incorrect. If you find a provider on there that you like, call their office first to check if they actually take your insurance. Additionally, I recommend using an online provider search like this one  from the American Medical Association. You can usually filter by insurance. Again, call to verify that they accept your plan!
1b. Make an appointment. Do so as soon as possible. Most doctors are slammed with back-to-back appointments for weeks on end. The sooner you make an appointment, the sooner you will see a doctor.
2. Find a specialist (if applicable).
When a competent general practitioner meets a symptom or issue they are unable to address, they refer you to a specialist, a doctor specializing in a specific field of medicine. (E.g., a rheumatologist specializes in immunological and soft tissue disorders like rheumatoid arthritis, lupus, or fibromyalgia.) Primary care providers usually refer you to specialists with whom they have an established rapport. This is usually fine. Still, I try to research the provider prior to the appointment to see if their special interests and experience line up with my medical concerns. If it looks like patients are dissatisfied with the level of care from that doctor, you have every right to call your GP and ask them to refer you to someone else. Try to gather a list of 2-3 specialists to which they refer you in case one of them doesn’t have any availability.
2a. If you have a PPO (Prefferred Provider Organization), you can usually schedule an appointment directly with a specialist without a referral. I did this to see my rheumatologist!
2b. What kind of specialist do I need? This is one of the trickier issues. There are so many types of doctors and even more types of conditions, many of which overlap in specialties. Here are some basics:
- rheumatologist: a doctor specializing in autoimmune/inflammatory conditions, heritable connective tissue disorders, and musculoskeletal disorders, and then some
- gastroenterologist (aka GI): a doctor "with dedicated training management of diseases of the gastrointestinal tract and liver"  - pain management: a medical subspecialty that addresses chronic pain and long- term management of treatment for chronic pain
- medical genetics: a branch of medicine dealing with the study and diagnosis of genetic disorders
- neurologist: a doctor who deals with "the study and treatment of disorders of the nervous system" . The neurology specialty covers conditions like peripheral neuropathy and dysautonomia, as well as neurodegenerative diseases like ALS (Lou Gehrig's Disease), and central nervous system issues like multiple sclerosis (MS). - orthopedist: a physician specializing in conditions of and injuries to the skeletal system. Many people go to an orthopedist for a broken bone or flat feet (pes planus).
Part B: Self-advocacy
1. Keep track of your symptoms. The time between noticing issues and checking in for your appointment can be weeks or even months. Having a prepared symptom tracker will make the appointment easier for you and the doctor, and will ensure that your symptoms are neither forgotten or ignored. Additionally, taking pictures of physical symptoms is highly suggested. That way if you can show them what your swollen wrist looked like 3 months ago when you made your appointment, reveal just how large your tonsils were, or you can ask about the greenish phlegm that came out of your nosehole last week. (Make sure to ask for consent before showing the pictures – some doctors are happy to see my documentation, others would prefer a detailed description to keep their lunch down.)
2. Do your homework - but only use credible sources. If you can keep a binder or google drive folder of your sources and relevant pieces of info, do so!
2a. Learn the names of relevant anatomical or medical issues. It saves you time, money, and spoons to tell the doctor specifics so you can get treatment faster and with greater accuracy.
2b. Note any treatments you’ve attempted, their efficacy, and how long you tried them. For instance, you have used ibuprofen 300mg for the past 2 months with mild to no relief, lidocaine gel for the past month with no relief, magnesium supplements 400mg/day with some improvement in muscle cramps. This way, you won’t have to listen to the third doctor in a row recommend the same two things you’ve tried for the last 6 months. You will get other recommendations and they can use the information on what has/hasn’t worked to improve their understanding of your condition and possible treatments.
3. Put together the last two steps to paint an informative, assertive, accurate picture of your condition and what you need out of treatment. Find some examples below. Try writing out your own script before your appointments! I know it sounds silly - but I promise it will be beneficial.
Less effective: “I’ve had wrist pain for 5 months.”
More effective: I’ve had burning, stinging pain on the ulnar side of the wrist since January, and it is worse at night or after putting pressure on it. My average pain level is a 4, but there were 5 days in the past month where it was an 8 or 9. They coincided with rainy days.
Less effective: “It hurts to walk or stand, and I can’t get anywhere.”
More effective: The inner arch of my left foot has a deep, aching, cramping pain when I walk for for than 2 minutes. It radiates to my ankles and knees. I often have to massage it but even that doesn’t help much. The pain has made it difficult to go to class or work.
Less effective: My shoulders have had a lot of pain and I haven’t been able to drive because of it.
More effective: The lavater scapulae are extremely tight and it makes it hard to turn my neck side to side. I’ve tried changing my pillow, self-massage, heat packs, and stretching to no avail. I have heard that trigger point injections, ultrasound therapy, and massage therapy may be effective treatment for this type of pain. I would like to see a physical therapist to address these issues.
(I'll make separate article on effective self-assertion in medical, academic, & other settings.)
4. Make medical professionals do their job.
Truthfully, this is one of the most difficult parts of getting proper treatment. Doctors seem like the ultimate authority whose opinions are the be-all, end-all of any medical activity. However, doctors are human. They are fallible. They can’t possibly know everything – even if they pretend they do.
This tip has been circling around the chronic illness sphere: If a doctor dismisses your (now well-researched and presented) concerns, have them write in your chart that they heard your concerns and chose to do nothing about them.
If you ask them for a blood test but you are told to lose weight first, have them write that down as a permanent part of your record. Usually doctors realize that this could result in a malpractice suit if you end up having something wrong with you after all. If you ask them to refer you to a gynecologist for endometriosis evaluations, but they say that cramps are normal and to just take Tylenol, tell them to write that down. You know your body best; if you think something is wrong, it’s always worth checking. The worst outcome would be that nothing is wrong – which you wouldn’t know if you don’t have a thorough medical evaluation. This is especially important for marginalized people to do in order to avoid taking the blame at a later date.
I wish I had done this. When I was 15, I woke up from what I thought was a nap with excruciating shoulder pain, limited range of motion, and confusion. When I went to the doctor, she told me it was “just some muscle strain” and sent me on my way. I felt that I was just being overly sensitive, and it probably was just muscle strain. That was in January 2013. At the end of April, I woke up in the emergency room at Cedars-Sinai, after my broken, dislocated shoulder was treated. The ER doctor said I’d had a seizure, and that the times i had “shoulder muscle strain” were actually very obvious indicators of having had a seizure. Of course it should not be the patient’s job to do a doctor’s work. I didn’t have the medical degree; my GP should have realized that waking up from a “sudden nap” with severe shoulder pain is not normal. But if I had known to speak up, I possibly could have avoided the second and third seizures.
5. You can fire your doctor.
If a doctor continually dismisses you, ignores your pain, and fails to provide a treatment plan appropriate for your condition, YOU DON’T HAVE TO KEEP SEEING THEM. I know, I know, it’s a crazy idea. I didn’t know I could fire my doctor until recently. The fact is, you are paying them to provide medical care; if they aren’t doing that, you are perfectly entitled to find a doctor who does do their job.
I will add to this guide as I acquire more spoons and knowledge! I hope this helps you.
Sources / Further Reading