Doctors & Chronic Illness

One of the most difficult things about chronic illness, especially when you are new to it, is learning how to navigate all the medical appointments and how to handle doctors. This post will hopefully give a little insight into dealing with the variety of physicians you will be with.

Types of Doctors/Appointments You Might Have

When you have chronic illness, you will not just have one doctor that you work with. There is often a team of medical professionals from a variety of disciplines. I have had more doctors than I can count in the past 14 years. I don’t remember even half of their names. To be honest I am doing good to remember the names of all the ones that I have now.

There will often be:

• PCP- Primary Care Physician
• Specialists (depending on your condition you may have multiple specialists)
• Physical Therapists
• Occupational Therapists
• Speech Language Pathologists
• Pain Management Physicians
• Surgeons
• Nurses
• Mental Health Professionals (chronic illness can take its toll on your mental state).

What To Be Aware Of

There are many things to consider when you start having this type of team providing medical care for your chronic illness/es.

1. It feels like a full-time job sometimes to handle scheduling all the appointments, handling insurance claims, sorting through multitudes of medications, going to the appointments, and doing additional therapies on your own.
2. Insurance may not cover the types of tests, procedures, or therapies that you need.
3. Specialists will take time to get into. Unfortunately, many of them can take 3-6 months and sometimes longer to get in with.
4. You may finally get to a specialist appointment, and they tell you that you actually need to see a different type of specialist. And then the waiting game starts all over again.
5. Not every doctor has a passion for discovering what is happening with you. Some of them may say unkind things to you. But there will be ones ready to stand up for you too.

Advice for Handling Medical Appointments

I want to share with you some advice on how to get the most out of your appointments.

1. Bring another person with you or ask if you can record what is being told to you (especially when meeting a new doctor or anticipating challenging news). It can be difficult to process all that information. Particularly when you are stressed, in pain, and exhausted.
2. Be sure to track how you have been feeling (pain levels, what you eat, amount of sleep you are getting, details about your bowel movements, etc.). This can help back you up when you list symptoms out to your doctors.
3. Be persistent, especially if a doctor isn’t listening to you. You know your body.
4. Ask lots of questions and do not leave until you are satisfied. If you think of more questions afterwards, message your doctor in MyChart.
5. Ask to be on a waitlist for appointments. Check in with your doctor on this, especially if your symptoms are worsening.
6. The ER will not do much for you with chronic illness. But if you cannot navigate your symptoms between meetings with your doctor, like not being able to eat or drink, it may become necessary to go.
7. You may need to take a break from doctors or find one who supports you better if you are starting to experience burnout from all the appointments.
8. Never forget that all this is with the goal of helping you manage your symptoms and if this isn’t happening, a new door needs to be opened.
9. Even if you are struggling, this is your reminder that you got this!