What to Look for in a Primary Care Physician When You Have a Chronic Illness

If you have a chronic health condition, then you are no stranger to needing to see multiple doctors and specialists. Personally, I see a neurologist, gastroenterologist, cardiologist, ophthalmologist, physical therapist and a counselor. Depending on your health condition and the complications you face, your list may be more or less extensive. Making time to see all these specialists can become extremely time consuming, but what can become even more time consuming is shopping for providers in order to find one you will feel comfortable with. But, in my experience, it can be even more difficult to find a caring primary care physician (PCP) than a competent specialist.

So, if you are living with a chronic illness, what should you expect from your PCP? Surely we can’t expect them to be specialists in our conditions, but we must expect a reasonable level of knowledge and care. If you are just starting to determine your needs after diagnosis or (like me) moving to a new area and searching for new providers, here’s what to expect from your new PCP.

1. They should listen to you.

When searching for a new doctor, you should set up an initial appointment to interview the provider to get a feel if you are comfortable with the care they are able to provide. When discussing your concerns, you should pay close attention to your doctor to see how they react to you. Do they wait calmly for you to finish what you are saying? Do they take your concerns seriously? Do they admit when they might not have the answer? Or, do they interrupt you mid-sentence? Do they dismiss or gaslight you when you mention your concerns? Do they pretend they know everything, going to the extent of giving you misinformation?

No matter how smart a doctor may be, it’s going to be extremely difficult for them to provide an adequate level of care if they do not listen to you. Take any indication of an unwillingness to listen to you as a huge red flag.

2. They should coordinate your care.

Many insurance companies require patients to receive a referral from your PCP to see any specialists. When interviewing your doctor, mention your condition requires treatment from other specialists. Your doctor should be more than willing to write those referrals. Being sick sometimes requires a lot of paperwork from doctors. Filing for FMLA, applying for disability, getting a disabled parking spot or a service dog can be much more extensive. So, gauge how your doctor reacts to the much simpler process of referring you to another provider.

3. They should be willing to learn.

When you have a rare condition, it’s not uncommon for doctors to have either never heard of it, or not know a whole lot about it. When I interview a PCP, I ask if they have ever treated anyone with Ehlers-Danlos syndrome (EDS) before. If they haven’t, that’s not an immediate cause of concern. But, they should express a willingness to educate themselves. It will benefit them by becoming more knowledgeable about another condition, it’ll benefit you because you’ll have a more knowledgeable doctor, and it’ll benefit their future patients!

4. They should be proactive.

Many health conditions can come with potential complications as the patient ages or their illness progresses. While there is sometimes merit with the “wait and see” approach, your doctor should be willing to educate you on what you might need to watch out for down the road. Your doctor should also be willing to provide testing and treatment for comorbid conditions that may develop at a later time. If your doctor seems knowledgeable about your illness, ask him or her at the initial appointment what your prognosis might look like and how you can combat any negative symptoms.

Searching for a new PCP can seem exhausting and never-ending. While you might run into a few bad providers, its worth it to keep looking for a good PCP you can entrust your care to. Most importantly, it is vital that you have someone you feel comfortable with and can trust. You have a right to choose who you trust your body and your business with.