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8 Tips for Choosing Doctors When You Live With Chronic Illness

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Choosing doctors is really difficult for me. When I first got sick, I prioritized seeing doctors I thought would know the most. While these were usually great doctors, they didn’t all work for me. At first, I thought this was my fault, but over time I’ve realized we’re all people, and all people don’t work together perfectly. You have to find the best people for you. Here are some things I wish I knew then so I could find doctors who would work for me.

1. Consider your values first.

It’s important to know what you want. Obviously, most people want to get better, but for people with chronic illnesses, this isn’t always possible. What are your priorities? Do you want to be able to spend time with your family? Or still participate in a religious community? Do you want to return to playing sports? Do you want to be able to keep your job?

Life with chronic illness requires sacrifices, but if you know what you want, you can start to work towards it. With limited time, energy and physical abilities, we really have to prioritize. But there is usually a way to make it work. I can’t work the job I worked the past three years and studied in college, but that job is truly my passion. So I am working to slowly improve my physical abilities, and in the meantime, I am pursuing further education in that field, so one day I can hopefully go back to it.

2. Do your research.

Ask friends or doctors you trust for recommendations. The best doctors are often referrals, even if it’s from one specialty to another unrelated specialty. If you trust a doctor and they know you as a patient, they will be able to give you the best advice for doctors who will work for you. Research experts on your condition. Learn who is doing research and who is studying treatments you are interested in exploring. Read reviews online so you have some idea of what to expect.

3. Choose a doctor who values your priorities.

Often, with chronic illness, care becomes not just about saving your life, but about saving your quality of life. Once you have decided what is most important to you, find a doctor who respects that and will help you work towards it.

I once saw a highly respected doctor, but he immediately dismissed my career and asked what I actually plan to do with my life. Regardless of his qualifications, I will not see him again, because he can not help me reach my goals if he doesn’t respect them.

4. Qualifications don’t mean everything.

I have seen over 20 doctors in the past few years, many of them experts in their fields, working at some of the best hospitals in the country. But unfortunately, some of the most qualified people were the least helpful. Some immediately dismissed me because I was young or a woman, refusing to take me seriously until I brought my parents. One expert told me he “didn’t believe in my illness,” and that I “had to stop expecting to get better.” The best doctors I have found are the ones who are willing to take the time to listen to me and take me seriously. Even if someone refers you to them, remember not every doctor works for everyone.

5. Choose doctors who make you feel comfortable.

Undoubtedly, you will end up discussing uncomfortable or awkward topics with your doctor. But you don’t want to be in a position where you’re afraid to bring up a new symptom or problem because you don’t feel comfortable with the doctor. Their job is to help you, and if you don’t feel comfortable with them, find somebody else.

6. Find doctors who are willing to do research.

With most rare conditions, even the best doctors don’t know everything about your disease, and many haven’t even heard of it. But if you find someone who is willing to do research, talk to experts and learn everything about your condition, they will be able to help you.

7. Prepare for your appointments and respect their time.

Doctors are incredibly busy people, and the more you respect this and respect the importance of the job, the more they will be motivated to help you. Prepare for your appointment with lists of medications, symptoms, ideas for treatments you want to explore, and questions you have related to their expertise. If it ends up being a doctor you don’t want to see in the future, at least you have this chance to learn from them, so use it to ask the most relevant questions. And if you do see them again, they will appreciate that you are able to make the most of their time.

8. Remember, you are in charge.

Not every doctor will work for you and your personality, and you must be willing to choose a different doctor. There are some situations where people are limited by insurance or location and don’t have this choice, but if you do, remember to make it. If you feel a doctor isn’t helpful to you, don’t see them anymore. I have started to think of first appointments as job interviews: I’m interviewing the doctor. If I don’t like them or I don’t think they will help me, I won’t hire them.

Doctors are incredible people who devote their lives to caring for others. Remember that in the vast majority of cases, they are trying to help, and don’t give up on finding doctors who are truly helpful to you.

Getty photo by Dragon Images.

Originally published: February 10, 2020
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