If you’re in medical school or thinking about it, you might want to help people or solve mysteries. You’ve probably talked to doctors about what the job is like. But have you talked to chronic illness patients? We have a completely different experience with doctors and it’s one worth hearing. In that vein, here is my advice for aspiring doctors.

I am (obviously) not a medical professional. While I know many chronic illness patients feel the same, I don’t speak for all of us. Additionally, this post contains affiliate links. 

Advice for Aspiring Doctors: What You Need To Know

Before we get into it, I want to add a couple of caveats. 

One, I have a lot of respect for good doctors. You have infinitely improved my life. 

Two, the reason many patients are wary of doctors is because you hold our lives and quality of life if the palm of your hands. You have so much power over us, which is also why many of us hate bad doctors. 

Three, if you are already a doctor and you fall into the category of good doctors, this post isn’t for you! I will say “doctors” many times in this post, and if you by and large are amazing, you do not fall into the category of bad doctors. 

Four, of course patients can be the bad ones. Those patients don’t always fall into the “we” and “us” you’ll see a lot of in this post.  

Reminders

We might be only one patient of many you see that day, but we sometimes have been waiting months to see you. We might be nervous for days leading up to our appointment, even though we’re just your 9 o’clock. 

And yes, we are very likely nervous! Will you believe our description of our symptoms? Will you take what we have to say seriously? 

But I also want to share that we might not look nervous. I can be lighthearted and joking at the start of the appointment and be crying during it. When you deal with chronic illness and pain, meeting doctors is a normal part of your life. I have an average of 2 appointments a week. I’m not going to be serious in the entire appointment for every appointment I have. That doesn’t mean that what I talk about doesn’t bother me. 

Additionally, keep in mind that no human being is unbiased. So if a colleague told you or wrote down that we are a problem patient or something similar, keep in mind that that might just mean that we advocate for ourselves, although it isn’t impossible that you’re seeing a problem patient. 

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Our Expectations

Very rarely do we expect that this appointment will fix everything, especially if we’ve dealt with our symptoms for a while. 

But we do expect you to listen to us. We do expect you to understand that this is an important part of our week, if not life. 

We expect you to treat us with dignity and respect. 

We expect you to not dismiss us out of hand. 

We expect you to explain your decisions and thought processes. 

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What We Might Feel

We might feel nervous about the appointment as well as about whether or not we’ll be believed. 

I’ve been dealing with symptoms and pain since 2001 and have extensive records to back up my symptoms and diagnoses. But I still don’t know if I’ll be taken seriously.

We might be hopeful for a diagnosis.

This surprises a lot of people, but it’s the truth. I was so thrilled to receive an autoimmune arthritis diagnosis because it meant my problem was believed and that there were medications to try. 

We might be upset by you not finding anything. 

Again, this surprises people, but it’s for the same reasons as the previous two. It’s often not even because you didn’t find something specifically – it could be that an appointment we waited a while for didn’t result in any changes, it could be that we hoped your specialty was the answer, it could be that we didn’t feel you listened to us. 

But it can be about you not finding anything. I’ve had too many appointments where the doctor I saw took “this test looked normal” to mean “therefore the patient is okay” instead of “so we should look at a more detailed test.” 

We might also be angry.

Angry at feeling like we’re not listened to. Angry that our body is doing this. Angry that we’re not taken seriously (or feel like we’re not). 

Angry at previous doctors. 

That’s a big one; my frustration with and distrust of new doctors comes from experience. Many people think that you only need be honest and upfront with doctors and they’ll believe you; that often isn’t the case. 

Is fair for me to distrust you if I’ve never met you? No. But it will take probably a decade of doctors listening to me for that habit to break. 

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What Happens When we Leave Your Office

Obviously this, along with many things, will vary from patient to patient, and many of it will seem obvious. But sometimes, having actions explicitly named helps people internalize them. And, to be clear, this is not intended to shame you. This is to remind you that just because we’ve left your office does not mean we stopped existing. 

First of all, we’re going to tell people in our lives about the appointment. What we were happy with, what we were upset about, what the next steps are, if we need to get tests, if we’re making a follow-up appointment. 

Depending on our medical team and what happens in the appointment, we might tell other doctors about it. And this isn’t necessarily negative! For example, my rheumatologist is not part of MGH, and while I generally send my medical records from MGH over to him, I’ll also message him to keep him in the loop. This is because RA affects huge amounts of my body, and if there’s anything notable from my appointment, he needs to know. 

On the other hand, if feel bad about an appointment that was at MGH, I’ll message my PCP about it. Sure, he’ll have access to the notes from it, but PCPs are so busy that I don’t want to wait until the next time I see him. I might need him to refer me to a different specialty if the one I saw can’t deal with the problem. Alternatively, maybe the appointment went badly and my emotions took over. Maybe I wasn’t able to properly articulate my or his concerns. Maybe I misunderstood the concerns. In those cases, he can talk to that specialist directly beyond what was in the referral. Maybe we were both just having bad days. 

We talk to other patients about our experiences.

Honestly, I get a lot of comments, emails, and messages from patients who recently had an appointment that didn’t go how they wanted or expected it to. Some times it’s because they need to vent to someone who gets it and they don’t have someone in their life who does.

But other times it’s because they don’t know what to do next. 

My blogging career is heavily supported by doctors who don’t take their patients seriously or who don’t fight hard enough for them. 

I’m completely serious. 

I have been helping patients navigate their medical care for years – always with the heavy caveat that I’m not a medical professional, of course. This is generally me suggesting: 

• Keep track of your pain for several weeks, especially what seems to make it better or worse.
• Instead of saying “I think I have POTS,” tell your PCP your symptoms without the obvious diagnosis so they refer you to a cardiologist or neurologist.
• Specifically describe the impact your symptoms have on your life.
• Describe your familty medical history as “several autoimmune diseases” before listing each one individually if they don’t have any connection other than being autoimmune diseases.

As much as I love helping patients, I wish my services were not needed.

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We can mess up, too

Just to be clear, of course patients can and do mess up. There are plenty of patients who are everything from rude to disbelieving or worse. And there are plenty of patients who have what seems to be outsized reactions to simple questions. 

I know that there are a lot of doctors who are good people and good doctors, but your colleagues who behave badly give you a bad name. Hopefully, you understand that some patients give the rest of us a bad name.

The point is that you are far more likely to see a patient who has been dismissed than one who is faking or who has convinced themselves that something is wrong when it isn’t. 

There are a few reasons for this. One reason is that medical care in the US is so difficult to access and so expensive that no one would put themselves through that. 

Another reason is that wait times are so long, both in the US and outside of it. When I started seeing my POTS specialist, I had already been diagnosed, and it still took 18 months to get in with him. 

So few people are putting themselves through that.

All of that being said, you do need to consider your safety and well-being. There will be patients who fight you tooth and nail, even if it isn’t necessary. There will be patients who, due to their own biases, question your every move. 

Just like you, we aren’t perfect people.

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Like this post? Share it! Then check out:

Tips To Make Independently Living with a Chronic Illness Easier, 9 Ways To Advocate for Disability Rights, 6 Tips for How To Accept a Chronic Illness, Resources for Chronic Illness: How Organizing Can Make It Easier