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
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.
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.