Having a chronic illness adds a lot of new things to your life. One of them is generally a new doctor or team of doctors. We all have many experiences with doctors. Are these doctors friends or foes? It’s up to you!
Growing up many see a doctor every year to have a physical. When you were younger your parents would take you to the doctor whenever you didn’t feel well. But when you’re older, it starts to change. Depending on your experiences growing up, you may already dislike doctors. You may even do whatever you can to avoid them. This isn’t uncommon. Even if you didn’t mind the doctor, if you’re diagnosed with a chronic illness you might feel yourself starting to dislike doctors. Again, it’s not uncommon. I, myself, have a whole host of bad memories of doctors.
When you’ve had bad experiences with doctors it’s so easy to go to the place of doctor bashing. To take those feelings towards a specific doctor and generalize them towards all doctors. To take those negative feeling towards your diagnosis and transfer them to your doctor. To say doctors are unfeeling. Doctors don’t listen. Doctor’s don’t help. I’m a little ashamed to say, I’ve been guilty of this myself.
But here is the thing to keep in mind: a doctor is supposed to be your partner in dealing with a chronic illness. Your partner. This is supposed to be the person that knows how to best help you and aid you on your journey with your chronic illness.
With that in mind, I’ve been making a concentrated effort to try to change my attitude towards doctors. Not just because I feel it’s wrong to generalize. But because my life and future treatment may depend on it. (Part of this realization came after reading an article from CreakyJoints about how your doctors treatment of you may be affected by how you make them feel.)
Here is what I’ve been trying to keep in mind to help aid me on this journey:
1. Doctors are practically handcuffed by insurance companies
I know this sounds a tad dramatic, but it’s true. Insurance companies control what is covered. And therefore often create the path of diagnostics and treatment. This fact makes me honestly feel bad for doctors. (And patients, but not the focus at the moment). This can be very difficult for doctor’s. Even when they want to skip a step and try a specific treatment for you based on your medical history, they don’t always have the freedom to do so! There are some cases where a doctor can, and it just requires some extra paper work. But truly, it’s not always possible. They’re already struggling in a system that has more control than they do. So don’t become another thing they have to struggle against.
2. Doctors training often includes the phrase: If you hear hoof beats, don’t look for zebras
It makes sense. Statistically speaking, it would be more likely to be a horse than a zebra. The same thing goes for your health problems. So that’s why when you show up feeling pain, they’re going to start with the more statistically probable causes. Of course this can be difficult to handle when you’re going through the diagnosis stage. It can be excruciating to have test after test come back normal while you’re suffering. Not only physically but emotionally. But the process is there for a reason. No matter how frustrating it is. Try a little patience, your doctor is probably frustrated too.
3. Medical science is nowhere near a complete understanding of the human body
It’s really very far from it. I’m personally not surprised. Sometimes when I think about what the human body can do I’m absolutely in awe. But when thinking about it in perspective with your medical problems, it can be maddening. Research is progressing every day, but it takes time to understand something as complex as the human body. In many cases, science does not understand why a chronic illness is happening. Which is often why doctors don’t have a cure, they have treatment. Keep this in mind when you start to get frustrated with your doctor for not “fixing” you.
Now even if you keep all of those things in mind, you’re not going to get along with every doctor you ever see.
Here are some tips on approaching your medical journey in order to ensure you have the best possible partner for the ride:
1. You need a doctor you can work with
I know I just spent a lot of time explaining why we should respect all doctors. And I stand by that. But doctors are still people. You’re not going to get along with every person you meet, and you’re not going to get along with every doctor you meet. Certain personality types work better together than others. And you need someone you can get along with! Now I’m not preaching that your doctor should be your best friend. Matter of fact I don’t think that at all. But in order to get the best possible results you need someone you can speak to in an open and honest way. I recently had an experience where I was seeing the Physician’s Assistant at my Rheumatologists office. I don’t really jive with her. I ask a lot of questions. A LOT. And I want full, scientific answers. Not everyone wants that, but I do. I do a lot of research and I want to hear anything that can help expand my knowledge of what’s going on and my treatment options. That’s why I picked the doctor. He has an MD and a PhD and he speaks in scientific terms. I appreciate that. But after my initial diagnosis I began seeing his PA. After my last appointment I was very frustrated and called the doctor’s office and asked to only be scheduled with the doctor moving forward. You have that right! If you don’t get along with your doctor you have a right to ask for a referral. You have the right to seek out a good partner for your journey. Sometimes it’s hard to feel like you can do this. I struggled with calling the doctor’s office and changing my next appointment. But here’s the thing: doctors want to help. And you have a right to that help. It’s important to keep that in mind.
2. Don’t be afraid to ask for what you want
Doctors are not mind readers. They also do not know everything (don’t tell them I said that). It’s important to be completely honest, about all of it. If you have a new symptom, if you have a new concern, if you heard about a new treatment, if you heard about a new herbal supplement… tell them all of it. Ask questions. Ask for tests. Ask. This is something I’ve heard a lot of people have problems with. They tell me that when they get into the doctor’s office they often forget what they wanted to ask. I keep a list in my phone to avoid this. I actually open the list and go through it with my doctor. If you’re someone who sometimes forgets to do this, maybe set an alarm on your phone to go off during your appointment. Do what works for you. The only stupid question is the one not asked.
3. Know your rights. Don’t be afraid to be your own advocate
This can apply to so many different situations. The first time I acted as my own advocate was about 5 or 6 years ago. I had a migraine that had lasted four weeks. I’m not even joking or exaggerating. I’d been having migraines since I was about 22. But this one was above and beyond what I had ever experienced. After about two weeks I had made a doctor’s appointment. The doctor prescribed steroids to try to “break the cycle”. It didn’t work so I made a follow up appointment. This was the point I had been in pain for a solid month. I went back to the doctor and she accused me of being drug seeking or it being “all in my head”. I was so angry! I had never even asked for pain killers! And of COURSE it was in my head! It was a headache! Saying a headache is all in your head is like saying menstrual cramps are all in your uterus! But instead of yelling (which was so tempting), I told her I wanted a referral to a neurologist. She didn’t want to give me one. Until I pushed the matter, because it was my right to ask for a referral. And it was her duty to oblige that request. Knowing your rights can make all the difference. Most doctors won’t put you in a situation like I was, but just in case. Don’t be afraid to stand up for yourself.
I hope all of this helps you along your medical journey. When living with a chronic illness, your relationship with your doctor(s) quickly becomes an important part of your comfort and future. This may sound like common sense, but above all, remember to be nice. Doctors are people too. And it’s no more their fault that you’re sick than it is your fault. A little kindness can go a long way.