Navigating Healthcare, Living in The Margins

If you asked me what having a chronic illness has taught me about the medical establishment it’s this: if you aren’t a man and you aren’t capable of making new men, the patriarchy places you on the bottom of the medical care totem pole. It’s even worse if you are a minority who isn’t wealthy. So, as a black lesbian with a chronic illness it would be VERY easy for someone like me to get lost in the system. If you are not a white man with money, you’ll also need to learn to speak up for yourself or else you can get lost in the system.


This is where aggressive advocacy has to come into play. Learning to speak up for yourself, advocating for yourself, and believing in the fact that you know when something is wrong with your body can save your life in our confusing medical system.


Here are some pointers on how to be your own Health Care Advocate


1. Know that medical professionals have a duty of care towards you. Whenever I go to the ER they demand I give them a urine sample specifically so they can perform a pregnancy test.  I will be writhing in pain on the floor and the first thing they worry about is a potential baby… They insist they cannot treat me until they get the pregnancy test results. I understand liability, give me a waiver I’ll sign, put it in my chart, stop bullying me when I’m in PAIN. In cases like this, medical professionals can take my blood, treat me for the pain, wait for me to re hydrate, and proceed. THERE ARE SO MANY OPTIONS.


2. You know your body.  When you go to the doctor make sure you are clear about your symptoms and you are firm about your pain. Do not let medical professionals shame you out of the treatment you deserve. Several different people will ask you to repeat answers to questions you’ve already been asked.  And if you are black and in pain, they will ask you what your pain level is many times in an effort to catch you in a lie and imply you are drug seeking. If you do not feel like they are listening to you, ask to speak to a different doctor all together. You may also ask to speak to a quality control specialist. This usually will light a fire under their asses and make them realize you mean business.


3. If you have a chronic illness make sure you inform medical professionals about that condition and any medication you are currently taking. If new doctors or ER workers don’t pay attention to a patient’s chart, they may accidentally (or negligently) attempt to give you medicine you should not have.  Make sure to clearly identify everything you are taking and ask if it will clash with any medications you are currently on. For example: I have had to stop nurses and doctors several times from giving me NSAIDS for pain because they didn’t read that I have kidney disease in my chart. In an attempt to not give me appropriate pain meds they have tried to give me low level NSAIDS for the pain, that medicine can damaged my kidneys further and cause me more pain and undue medical complications. Without my own vigilance my health could deteriorate even further.


4. Have faith in yourself. Speak up for yourself. Be bold and brave and entitled. When you are sick and not feeling well it is their job to heal you. Do not feel ashamed to ask for help. Be sure and pushy if you have to and stand in your truth. There are too many of us who are being abused and discarded by a system that wasn’t made to cater to us. It is up to us to force that system to evolve. For ourselves and for those who look like us and will come after us.

What do you think?


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  1. I’m in UK and lesbian but pink skinned and for 20 years I still ain’t got treatment I need despite fighting, complaining, doing everything. They want to diagnose u with cheapest-to-treat stuff eg. Schizoaffective disorder Not bipolar; anxiety and depression Not complex trauma; and Never personality disorders. However I’m hoping Jeremy Corbyn will get elected and fund healthcare properly. Psychiatrists over here are abusive, lie, lack empathy, look down on patients, think they are superior web often they don’t know what much, truthfully (same guy has changed my diagnosis several times and in UK they believe it’s normal for diagnosis to change!! Wen actually it only changes if it was previously incorrect).and patients have zero power. So yes I agree u must know Ur rights and make them scared (“light a fire under their ass”) etc. And obvs if u don’t have pink skin like me, it’s much worse unfortunately. I’m having to move area in the hope that healthcare in new area is better (I’ve been told it is). They call it a “zip code lottery” (except we call zip codes ‘postcodes’). Yes keep fighting & let’s hope one day ppl won’t hav to fight for basic human requirements like basic levels of appropriate healthcare. It should be a human right imo.

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