the-doctors-advocate

Dealing with Doctors When You Have a Chronic Illness

When you have a chronic illness, or deal with chronic pain, you learn pretty quickly that you are your best and only advocate. Doctors can often be rude, dismissive, and distrustful. They may make you feel like you’re unimportant, or imply your symptoms aren’t as bad as they really are. They may even accuse you of lying. 

It took two years, and six doctors, to finally have my endometriosis taken seriously. It was frustrating, and I often felt like maybe I was going crazy. Like maybe the pain really was all in my head. 

Here are a few things I’ve found helpful, and some advice from a friend of mine who is a doctor. Please feel free to add to them in reblogs or messages, I’d like this to be comprehensive. 


Some helpful phrases:

I’m not happy with my current method of treatment because…

I no longer feel my symptoms are manageable.

I want to trust your expertise, but I don’t feel that I’m being taken seriously.

I’m confused, can you repeat that?

I don’t understand, can you simplify that?

That will help with the pain. Is there anything that can help with…?


When going to see a doctor about a diagnosis

Do

Make a list of your symptoms, medications (including supplements), medical history, and family medical history before going in.

Be firm and clear about how your symptoms have affected your life, and what you would like from any possible treatment (for example, is it more important to you that you are able to work full time, or that you are completely free of pain?)

Tell your doctor all your symptoms, but make sure they know which ones are the most severe, and which ones affect your life the most.

If you have a uterus, tell your doctor if you plan to have children someday.

If you don’t plan to have children, ask your doctor if the treatment would be different for someone without a uterus, or who they considered old enough to decide not to have children. Ask why they have chosen the current method of treatment instead.

Ask your doctor to repeat any instructions they have for you, and write them down. Speak up if you’re confused, and follow the instructions carefully.

Don’t

Exaggerate any of your symptoms in order to be taken more seriously.

Downplay any of your symptoms because you don’t want to seem annoying or attention-seeking.

Leave anything out because it’s embarrassing or difficult to talk about. I can guarantee your doctor has heard and seen worse.

Lie to your doctor about your diet, exercise, or drug and alcohol use. They won’t judge you, or report you to the police, and it could be relevant.

Leave the appointment without a solution, prescription, or avenue of further research (eg blood tests, or a referral to a specialist).

Get angry or feel ripped off if the doctor has to google a few things. GPs are general practitioners, and it would be impossible for them to know everything about every pill and illness on earth. They’ll still get more out of a google search than you will, because they have a much better understanding of medicine and the human body.

Edit: Just to clarify, because I made someone really angry because I think I wasn’t clear on this point. If you go to a specialist, and they type all your symptoms into google and base your diagnosis off of that, of course you have every right to be angry. I’m talking about a GP checking side effects or contraindications before prescribing you something, or quickly checking to see if there’s any new information about your condition since the last time they learned about it. It would be impossible for them to know everything about every illness and medication ever, and I would personally rather they checked before prescribing me something. Doctors have access to medical journals and information that we don’t have access to, and in general they know a lot more about bodies than the average person. 

Of course, your doctor should listen to you, and talk to you about your symptoms. That’s kind of the whole point of this entire post. I just don’t think you should automatically dismiss a doctor as an incompetent idiot just because they might want to double check something before tell you.


How to talk about fatigue with your doctor

Fatigue or exhaustion can be hard to describe, and just saying you’re tired all the time can be misleading.

Write down the times of day you feel most tired for at least a few weeks before going in. Also write down what you eat, and any exercise you do. This may be helpful to the doctor, and even if it isn’t, you may be able to find some patterns that help you manage your fatigue on your own.

The doctor may ask you to rate the feeling of fatigue on a scale of 1 - 10. This can be helpful, but is also subjective. Make sure you also communicate how the fatigue has affected your life. Is it preventing you from going to work? Have you had to give up the things you love because you feel too tired to do them? Has it affected your relationships?


How to talk about pain with your doctor

Describe the physical sensation. Just saying it hurts doesn’t help the doctor figure out what’s going on, so you need to be specific.

You can use words like constant, intermittent, throbbing, acute, aching, dull, sharp, burning, stabbing, stiff or tight.

You can describe your pain by comparing it to other things. For example, my pain feels like needles, being squeezed too hard, a broken bone, a toothache, a cut from a knife, an electric shock, waves that come and go, a bad sunburn, banging my elbow etc

Describe where the pain is taking place. Be specific, but try not to guess at a particular organ or muscle, even if you’re very familiar with the human body. 

If it’s helpful, you can print out this chart, and colour in the areas that hurt.

Make sure you specify whether the pain is deep inside your body, or superficial (on or just under the skin).

Tell your doctor what effect the pain is having on your life. This is extremely important. They may ask you to rate your pain on a scale of 1 - 10, which can be helpful, but pain is subjective. One person’s 8 might be another person’s 4. 

It is much more informative in the case of chronic pain to tell your doctor things like: My pain stops me from going to work on a regular basis; my pain prevents me from doing the things that I love, my pain makes me irritable, depressed, anxious, or short tempered; my pain is unbearable; I am no longer able to work full time as a result of my pain; my pain stops me from having sex; my pain has affected my relationships; I no longer feel I can manage my pain.

You may think your doctor is only interested in physical symptoms, but in reality telling them the ways your illness has affected your life gives them a much clearer idea of the severity of the symptoms, and of what treatments are necessary. 

I hope this is helpful.

Carrie Fisher...

My preferred take on the present situation: She is now more powerful than we can possibly imagine.

Terrific actress, thoughtful writer, clever screenwriter and gifted script doctor, courageous advocate and gadfly: she will be so missed.

Wow. #TheView fucked up. NURSING is a talent & I hope you realize that if you or your loved one is ever hospitalized that the person you will mostly depend on is THE NURSE, not so much the doctor bc they do rounds with their hundreds of patients. THE NURSE is the one who has first hand perspective of what the patient is going through & are the ones who CALL the doctor to advocate for the patient. #boycotttheview #shameonyou

Years before the White House was lit in rainbow colors celebrating the Supreme Court’s decision legalizing same-sex marriage, President Obama used a routine bureaucratic tool that ended up significantly changing the government’s understanding of gender and how it can be changed.

The process began during Obama’s first year in office when he issued a memo in June 2009 instructing agencies to extend to same-sex couples some benefits that the spouses of federal employees receive. Over time, that directive led to a decision by the Social Security Administration to greatly lower the threshold requirements for changing one’s sex on official government documents, a change that would determine how a person’s gender is recorded on passports, tax returns, marriage licenses and other documents.

Since June 2013, someone wishing to change their sex classification on their Social Security card has needed to provide only a doctor’s note guaranteeing that “appropriate clinical treatment” is underway.

Before then, a person seeking to change their sex on the document had to undergo gender reassignment surgery, an expensive and, many LGBT advocates and doctors say, unnecessary procedure for a transition to take place.

— 

Obama’s Quiet Transgender Revolution | Juliet Eilperin for the Washington Post

A great Friday read on what the Obama administration has done for transgender communities. In one word: lots. 

I’m so tired of explaining to people that I don’t want to be a doctor. I don’t want to diagnose. I don’t want to prescribe. I don’t want to manage care. I don’t want to go to med school. I’m not “trying to play doctor” when I advocate for my patients. I want to provide hands on care at the bedside to my babies. I want to be a nurse. I shouldn’t have to preface that desire with “but I love doctors!” or “I actually had better test scores than my med school siblings, I just didn’t want to go that path!”

Nursing deserves respect on its own, without any comparison to what doctors do. We’re not in competition and I have nothing to prove.

Monstercat Says:
It’s okay to look for a new doctor!

If your doctor isnt treating you with respect, treating your issues, giving you the help you need, or even if your doctor just isn’t being proactive with dealing with your health issues, its OKAY to look for a new one. There’s a lot of stigma around “Doctor Shopping”, or patients who switch doctors looking for pain meds - but don’t let it get to you. If you need pain medication to survive, then it’s okay to find a doctor who will understand that, and give you the help you need and deserve.

Because that’s the key. You deserve to be treated with respect. You deserve to have a doctor who helps and advocates for you. You deserve a doctor who will give you the treatment - including medication - that you need to help you. 

i gotta tell you guys this story omfg

so my dad has been in extreme pain for a very long time now. last year they determined he had a hernia after visiting the hospital non-stop for three months. they operated on it things were good for a little bit but still not that great and then all the pain came back like a thousand times worse. we’ve been going back and forth to the emergency room and trying to get in contact with his doctor and veterans advocate for a while now because he’s been in crippling pain and literally no one is doing anything.

whenever he goes in they’re just like “you’re in pain? idk what to tell you guy dude man but hey here’s some pain pills” and he’s like “no i don’t want pain pills i want to know why i’m in pain”

sometimes when we go in they like do a bunch of tests and checked his arms for track marks to see if he’s on drugs or addicted to pain pills and if he’s just showing up to get the pain pills but he HATES pain medications and every time they prescribe them to him he’s like “no seriously these don’t help they just make me stupid and i’m still in pain” and he doesn’t take them

but they don’t test anything else, just to see if he’s a drug addict.

oh and one of the things that is accompanying his pain is this very large lump in his side like???? seriously???

SO ANYWAY last week we were at the hospital four days in a row and on the fourth day they decided to humor him and run a bunch of random tests and said “yeah we’ll get back to you with the results or whatever” so today we had an actual appointment and we went in to see his doctor and his doctor left the room and a psychiatrist came in and pretty my just nicely says “there’s no reason for you to be here, the pain is all in your head. here’s some medication that could help with that whole crazy head thing you got”

JUST FUCKING THEN HIS DOCTOR COMES IN AND IS LIKE “oh so apparently you have three hernias and some really bad internal scaring which is doing all kinds of wonky stuff to your system so we’re going to operate”

IT TOOK THEM SIX MONTHS. SIX FUCKING MONTHS OF JUST DOING NOTING BUT CALLING MY DAD A PILL JUNKIE AND EVEN TELLING HIM THE PAIN IS ALL IN HIS HEAD UNTIL THEY FINALLY REALIZED “OOPS, MAYBE THERE IS ACTUALLY SOMETHING WRONG HERE…..”

SIX MONTHS.

wow.