How I learned to start sticking up for myself

Being an advocate for yourself in healthcare settings

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Having Long Covid has been a tremendously difficult and challenging journey, to say the very least. In the before times, people who knew me in real life typically described me as confident, assertive, and not afraid to speak my mind. I generally think this was a fair assessment and continues to be, save for when it comes to healthcare.

Historically, women have generally not been believed or taken seriously in healthcare settings (and don’t even get me started on what trans people have to go through to access basic healthcare). As Dr. Elizabeth Comen details in her book “All in Her Head,” women are often not believed, ignored, gaslit, or worse, in healthcare settings. This has been going on for hundreds of years and is still going on today.

The ailments we note in appointments are boiled down to anxiety, OCD, stress, being overweight, or our general “hysteria” since we’re you know…women.

Those of us with Long Covid are similarly not believed by many practitioners.

I’m two for two, and I hate it.

Since developing Long Covid in the beginning of 2022, I’ve had to go to dozens (maybe over a hundred now) of medical appointments in a desperate attempt to seek help, relief, and treatment for the myriad symptoms plaguing me.

I’ve seen primary care physicians, gastroenterologists, cardiologists, pulmonologists, endocrinologists, audiologists, allergists, immunologists, dermatologists, urologists, gynecologists, sleep medicine doctors, functional medicine doctors, psychiatrists, acupuncturists, chiropractors, osteopaths, speech therapists, physical therapists, ayurvedic practitioners, and more. I’m a little scared to even count the number of appointments I’ve been to in the last 3 years but I’d guess it’s probably in the 99th percentile of visits to doctors by Americans.

I don’t have anyone in my life like a spouse or caretaker or patient advocate to accompany me to appointments. I am the only person advocating for my care and it is utterly exhausting and demoralizing. But I have no choice. I am my only and best advocate.

Despite my immense privilege given my race, my English fluency, and my socioeconomic class, it’s still been a nightmare to try to advocate for myself. I am relieved when I have virtual appointments because at least I can lower the risk of exposure and I don’t have to wear a respirator in the appointment (which when I do in in-person appointments, I can absolutely tell the doctors are judging me and thinking I’m either a hypochondriac or am overly anxious. No, sir, I am just a Covid realist and I know the science of this virus and of transmission, thanks).

Ironically, I have also been working in healthcare for the last five years now (by accident), and occasionally pull that card to try and buy myself more credibility in the eyes of my doctors, but I also know not everyone has the ability to do so. I’ve even considered getting an MPH just to have some credibility from such credentials to support my complaints.

But even when I can pull the healthcare card, or show journals and cite my sources, the condescension, disbelief, denial, gaslighting, ignorance, judgement, and lack of support offered by the medical profession has still been abysmal to me as a Long Covid longhauler. Compared to others I know, I feel like I have it relatively “easy” because I don’t have the most severe case of LC and because of all the different levels and angles of privilege I have, but regardless, it still has been tough.

It’s a never-ending marathon of challenges for me (both mentally, emotionally, financially, and sometimes physically) to go to my doctors appointments and get them to believe me (and then actually do something to help me), despite having gained a lot more confidence in my scientific knowledge and understanding (about epidemiology writ large, along with Covid and Long Covid), and confidence in trusting and knowing my own body and voice.

I’m still learning how to be a better advocate for myself and have a long way to go, but today I’d love to share some lessons and techniques I’ve learned that have helped me speak up for myself face-to-face with healthcare professionals and be better prepared for these appointments. Maybe they can help you too - whether you have Long Covid or not. This is primarily targeted to long haulers, but anyone can use these tips.

Write out questions / notes beforehand

Part of my Long Covid experience has been the obliteration of my short term and long term memory, much to my dismay. I’ve also been experiencing major comprehension issues especially when it comes to verbal communication. Before every appointment, I make a list of questions and points that I want to raise on the reminders app of my phone (you can also do this on the notes app but I particularly like the reminders app because it lets you easily check off the points that you’ve covered).

Not only has this technique helped me make sure I remember to cover every point I wanted to raise, but I have noticed that it helps keep me organized, (usually) makes the doctor take me more seriously (not sure why? maybe because they see I’m prepared), and prevents me from letting the doctor make me feel rushed in the appointment (which happens a lot).

Record the appointment

I don’t use this one quite as often but occasionally - and especially for more complex appointments or when I know the doctor speaks quickly, usually tries to rush me through an appointment, or gives me instructions for after the visit - I ask if I can record the appointment using the recorder on my phone. This lets me transcribe the appointment and also listen later in case I missed anything. It’s helped me feel a lot less flustered when I can’t keep up with what’s being said but I’m too nervous to ask them to repeat themselves or slow down (that’s my next goal).

Compile all your history

For my disability application (which was unsurprisingly denied) I had collected all my appointment notes and records since I first developed LC, along with all my blood work, all my medications/supplements/treatments, and the contact info for every single doctor I’ve seen in this last three years. This is of course immensely energy and time intensive, but I now have a very thick binder organized into sections that is useful in case I need to refer back to something.

I also made an detailed and organized overview of all my Covid infections, and all my symptoms (including what happens when I have it, when it started, when it ended (if it ever did), what triggers it, and other relevant notes). I try to update when I remember to. It looks something like this:

Below that grid in the same document I have a more narrative based overview that I try to update every month or every other month to describe what’s changed / gotten worse / better. I also have a different excel table that I update when I have major “events” (e.g., crashes, or very severe symptoms). Any time I have an appointment relating to my Long Covid I bring this shorter overview to show my doctors not only the extent to which LC has ravaged nearly all systems in my body, but also to show that I am not faking this and that it’s now been three years of this hell.

Asking for accommodations ahead of time

As I’ve written about extensively on here, I am now very Covid conscious/cautious (or a Covid realist, if you prefer). I wear a high quality respirator in all indoor spaces and most outdoor spaces (and nothing less than a N95 in medical settings).

Because I know I sometimes have trouble asking for what I need when it comes to my health and safety, I’ve taken to emailing providers ahead of appointments requesting accommodations. This way I 1) can know ahead of time if they can meet my needs or not, 2) gauge how they’re going to treat me vis-à-vis LC, 3) avoid the awkwardness or fear I have of asking in person/on the phone.

Though of course your required accommodations may be different than mine, here’s a text I send my email before my appointments (adapted from an amazing member of my local Still Coviding community on FB):

I am immunocompromised and have a medical condition that, according to the CDC, makes me high risk for severe Covid outcomes. For my in-person appointments, I am requesting reasonable accommodation in the form of 1) N95 masking by anyone who enters the exam room, 2) a HEPA filter in the exam room (if available) and 3) no symptomatic staff members present in the exam room, as guaranteed by the Americans with Disabilities Act for safe healthcare, pursuant to my right to “full and equal access” to health care services under federal law (28 C.F.R. § 35.151 (Title II); 28 C.F.R. Part 36, Subpart D (Title III)). The ADA protects people who are immunocompromised per the ADA Amendments Act of 2008. If masks and purifiers are not available in the office I am happy to bring both. Thank you in advance for confirming if the office can accommodate me!

I always have sealed 3M Auras and KN95s on hand to offer medical staff, and got an Air Fanta portable air purifier that I can take with me to appointments and assemble in a few minutes (I recommend letting it run for ideally 15 minutes in your exam room if/before you have to take off your mask for any reason). Of course this does require some courage, energy and a lot of financial privilege, but I want to mention both as an option.

Sometimes the email works but sometimes it doesn’t. At least when it doesn’t I can know ahead of time and have adequate time to prepare myself with other measures - or simply find a different provider. I imagine things will change for the worse with this new administration, but it’s always worth asking, especially as some states are re-recommending masks in healthcare settings).

Send resources

Over the last three years I’ve learned a lot of things including the fact that a majority of doctors know absolutely nothing about science (e.g., epidemiology - the study of how diseases spread and affect populations, and how to prevent them), a majority know nothing about the basic mechanics and consequences of Covid (and again, how to prevent it), a majority don’t know how and why masks/respirators work, and an even greater majority know absolutely nothing about Long Covid. It’s been shocking to see how much ignorance and denial exist about LC, especially since more recent estimates put the number of Americans with LC at at least 7% (though the real figure is almost certainly higher) and disability claims are skyrocketing.

As such, I’ve put together a comprehensive list of resources on Long Covid that I can use to find the relevant papers/articles/overviews on COVID quickly and easily to send to doctors who either don’t believe me or simply don’t keep up with the research as they should. Of course, new information and research continues to come out weekly, but this provides a good foundation.

You can find that list here.

I can’t promise they’ll read what you send but my sending information from reputable sources like the Lancet, NASEM, Hopkins, and more, I’d hope that they will maybe reconsider that they actually don’t always know everything (as much as they’d like to believe they do).

Ask why (or why not)

If you request a certain treatment or test, and your doctor disagrees and/or refuses to pursue that path for you, first ask them why. They should be able to clearly explain to you why said service/treatment/testing is not advisable or feasible for you. If they cannot (or give you a BS excuse) push back. (I often bring medical journal articles for treatments that I want to try to show ‘proof’ of concept and effectiveness.) If they stand by the denial, then ask them to document the denial of service/treatment/testing in your medical records. Chances are they may reconsider or think twice if they know it will be documented. The next section goes into more detail on this, but I also recommend reviewing your appointment notes / medical record afterwards, and if they failed to include what was denied and why, call or email the office and ask that the doctor amend the notes to reflect what happened in the session.

Review your appointment notes / health record

After every appointment, your doctor will most likely upload appointment notes to the practice portal. I highly recommend you review these. I have noted on several occasions the presence of details included that were simply wrong or details that i expressly asked not to be included in my medical record.

You have every right to go back to that doctor and request these records be corrected or amended.

Final thoughts

Especially when it comes to Long Covid and so many doctors think we’re lying, delusional, anxious, etc. it’s important to make sure your medical notes don’t reflect reality. There are too many stories about ME/CFS patients being involuntarily committed to psychiatric wards because their practitioners didn’t believe them and thought their illness was all in their head. Anecdotally, I’ve heard similar things with LC.

As confident as I was in my life before, navigating healthcare as a disabled / immunocompromised / queer / neurodivergent / woman has been nothing short of exhausting. I think women especially have had it beaten into them (literally and figuratively) over the centuries that we should not ask for what we need or want. We should stay quiet. We should be complacent and demure.

But the way I’ve experienced and looked at the world has changed. I am the only one in my life keeping myself safe. My family, my friends, and my doctors are not keeping me safe. The government is not keeping me safe. My society is not keeping me safe.

Why would I feel bad about asking for what I need and require and want, when most of these are literally to help keep me safe and alive. I’ve truly stopped caring as much about what people think of me (especially when I’m the only one all masked up in spaces) because they won’t pay the consequences if I get sick again. They’re not paying my medical bills. They’re not helping me during crashes. They’re not doing anything for me.

The same goes for my doctors. They’ve let me down time and again, and very few have actually proactively tried to learn more about Long Covid and help me find answers. If these doctors refuse to do their duty and “do no harm” (yet still not wear a mask, let alone educate themselves on Covid/Long Covid), why should I be afraid to ask for the things I need?

I’m still working to internalize these lessons and find my voice, but I can already tell it’s getting stronger with practice.

I’m living for me, not for them. They don’t have to live with the consequences but I do.

If you have any other techniques or tactics you’ve used to be an advocate for yourself, I’d love to hear them. Please share them in the comments below!

Note: All my essays are stream of consciousness, mostly because I’m too tired and brainfogged with my LC and ME/CFS, but also because it’s a nice experiment to be (mostly) unfiltered. Thanks in advance for excusing any typos, spelling mistakes, etc.