I recently had an appointment with a rheumatologist at a top rated hospital.
I waited months for this appointment and was very hopeful that someone would be able to help me find the answers I had been searching for.
The day that the appointment was scheduled, I happened to wake up with chest pain. I’ve had this pain for over two years now, although it comes and goes in episodes.
The pain has been severe enough to land me in the ER a few times. Doctors just dismissed me after all my cardiac tests showed up normal.
My pain levels on that day were excruciating. I almost had to cancel my appointment because I felt too weak to even stand up. But the appointment was important to me, and so I dragged myself.
I figured that maybe the appointment would even help provide me some answers about this pain.
However, this hope was short lived.
When a doctor doesn’t believe you
This doctor kept dismissing me when I brought up the chest pain. After the 3rd time bringing it up to her, I finally broke down in tears.
Despite my telling her that I had been to the ER multiple times for severe chest pain and that my heart rate would go all over the place, she never even bothered to take out a stethoscope to listen to my heart.
I finally asked her, “can you at least try listening to it?”
She looked at me as if the idea had never even crossed her mind. That this was some shocking revelation, and she said “well, I have to go find a stethoscope somewhere.”
Somehow my words were still seen as the ludicrous ones in this situation.
Then she looked at me with a face that was probably meant to be comforting, but just seemed petulant:
“So, honey, what do you do to manage your anxiety?”
As if being in pain weren’t enough of a reason to cry.
As if every doctor dismissing you for the last 2 years shouldn’t make you frustrated.
It’s the ultimate lose-lose.
If you’re too calm when explaining your symptoms, they must not be that serious.
But if you show too much emotion? You must just be hysterical.
And if you end up in the ER because everyone has ignored your symptoms until they got too severe for you to function, you must just be med seeking.
What do you mean you just want answers? We don’t believe you. No one has those here. Good luck.
She went off in search of a stethoscope. When she returned with one she finally acknowledged that my heart was beating irregularly fast.
Still, she asked no further questions about my symptoms.
“As a physician, I have to advise that if you’re really worried that you’re having a heart attack then you should go to the ER.”
But I never said I thought I was having a heart attack. I knew full well I wasn’t having a heart attack, because this happened all the time and *surprise* I hadn’t dropped dead from a heart attack already.
All I wanted was a doctor to believe me and try to help me.
Things you can control when your doctor doesn’t believe you
I haven’t spent much time being a chronically ill patient, but I have spent a lot of time being an undiagnosed one.
As in, like, my entire life.
I’ve had countless doctors not believe me. Telling me that I just need to exercise more, I’m too young for that, blah blah blah.
I finally had an appointment with a cardiologist earlier this week. He found it necessary to ask me if I did cocaine after introducing himself by saying “well you’re much too young to have any heart problems.”
Hanging up from this telemed appointment in tears, a feeling of defeat washed over me.
Yet another doctor who didn’t believe me. I started to question myself.
This is a feeling that is not unfamiliar to me, and I suspect that it is not unfamiliar to many who live with chronic illness.
While you can’t control if our doctor doesn’t believe you, there are some things that you can control. Managing these 7 things can help you feel less helpless in these situations.
Have notes prepared
This is something that I have started doing for all of my appointments.
I could be 100% sure of what my biggest symptoms are before heading into the appointment…. but then the actual day rolls around and I have brain fog and I’m in pain and I got lost 3 times on the way to the office and by the time I see the doctor, I’ve forgotten everything important that I needed to talk about.
Having a list of things you want to address can help make sure that you don’t forget any important information!
Have previous test results ready
At least in my personal experience, this is one of the absolute most important things you can do. Not only will it save you endless time, but also endless frustration.
Something I have learned is that for most doctors, they need to see test results right in front of them to acknowledge their existence.
I have had my thyroid tested at least 6 times. Despite telling each doctor that I have already had it tested and it is always completely normal, they never seemed to believe me without a copy of the lab work to prove it (which is understandable).
While it’s not always the biggest deal for things like routine blood tests, it can start to get aggravating when doctors want to reorder tests that are more in depth such as MRI’s, CT scans, echo’s, etc.
You could always try to rely on the doctors being able to pull these records themselves or having another office send them over, but it just creates more work for you in the long run.
Whenever you have some sort of testing done, ask if you can have a personal copy of the results. You will thank me later.
Contact a patient advocate
I had literally never even heard of a patient advocate until I started doing the research for this article. While you might assume patient advocates only help patients figure out insurance and billing issues (and they do!), there are also patient advocates who specialize in helping you with your healthcare.
This includes services such as assistance with the implementation of treatment, asking important questions, pressing to get answers, and coordinating care.
Some hospitals have patient advocates on staff, so you should ask if a patient advocate is available for you to help you with navigating your chronic illness.
If your healthcare provider does not have patient advocates on staff, it is still possible to access them.
The AdvoConnection Directory can help you find certified patient advocates in your area.
It is important to note, however, that you are responsible for the cost of payment for the advocates found on the AdvoConnection Directory. Many people with chronic illness already face increased financial burdens, so unfortunately this is not a viable option for everyone.
Ask the doctor to document it in your chart
A helpful tip I had read a while back from someone with a chronic illness is to ask doctors to make a note in your chart if they refused a test or a certain course of treatment.
This might not necessarily make them reconsider their position (which is fine!) However, it will help document that you had concerns about these symptoms and expressed them to another doctor previously.
Reiterate the message and ask questions when needed
Sometimes, the feelings we have of being invalidated can come down to a simple miscommunication.
How will your doctor know that you don’t understand them if you don’t tell them? No one is a mind reader.
If you are completely lost at what they are saying, let them know.
If you don’t understand the reasoning behind their recommendations, ask them to explain.
Stopping to say: “I think I’m just getting lost somewhere along the way, would you mind going back and explaining your reasoning for this course of treatment so that I can understand better?” can go a really long way in making sure you and your doctor are on the same page.
At the end of an appointment, I like to reiterate the general consensus to the doctor. This helps make sure I understood and the correct message got across.
“So I just want to make sure, I should go get x test and then call the office for a follow up?” or “The next step is to try x medication and track my symptoms for a week, correct?”
These tips will help ensure that there is no miscommunication between you and your doctor.
Remember your “constant”
The last idea that can really help when dealing with dismissive doctors is the idea of a “constant.”
A constant is a person in your life that you can always rely on, who gives you comfort and support, who consistently inspires you. If you don’t have a real person to think of, you can create one in your mind.
Now – when you think of this person: do they ever make you feel crazy, defeated, hysterical, or like you’re not telling the truth?
Use your constant as a reminder to yourself. You are not crazy, hysterical, or making it all up, even when it seems like no one else believes you.
Ideally, you will have at least one experience with a doctor that will allow them to serve as your constant.
My constant is a doctor at my university health center.
This doctor, who I now think of as my constant, has never once made me feel like I was making things up.
He has never made me feel that my symptoms were “all in my head” or that what I was feeling wasn’t valid.
He has never made me feel that I’m taking up too much time.
If he prescribed me a new medication, he either called me or had weekly appointments with me to check in to see if I had any side effects.
Unfortunately, it is inevitable when living with a chronic illness that there will be times when doctors make you feel invalidated.
While it can be crushing, try to remember your constant. Whether your constant is a real person or a figure you imagine, hold them close to you and over time you will come to realize the type of treatment that you deserve.
You deserve to be believed, listened to, and helped.
Find a new doctor
If a doctor is really unwilling to listen to what you’re telling them, there’s no point in seeing them. It’s unfortunate that there are still so many out there who doubt chronic illness, especially in younger people.
At the end of the day a doctor unwilling to work with you isn’t beneficial. You’re better off just going to find a second opinion or having your care taken over by someone else.
Remember that it may not even be that your doctor doesn’t believe you! Instead maybe your personalities just aren’t a great fit.
I’ve had professors who I don’t think are terrible at their job, however, their style of teaching just doesn’t line up with how I learn best.
The same goes with doctors.
Especially when dealing with a chronic illness, you need to find someone who works well with your personality.
Keep fighting – even if your doctor doesn’t believe you!
Women with disabilities and chronic illnesses who already spend infinite energy just existing (let alone actually dragging themselves to the doctor) then have to spend even more energy asking to be heard and taken seriously.
It happens often that a doctor doesn’t believe the severity of women’s pain. However, this doesn’t mean that your symptoms are not real.
Always remember that your feelings and pain are completely valid.
Even if it means you have to fight to make others realize it.