DISEASE MANAGEMENT: Being your own advocate

We all know how difficult it can be to deal with the myriad doctors it’s necessary to see when dealing with a chronic illness. Some will be at least good, some may be clueless. But unless you can doctor-hop, you need to figure out how to partner with them to your best advantage. Below I’ll outline some strategies I’ve heard about or used. I hope they help!

1. Be honest about your medical condition: Symptoms, things that make those symptoms better or worse, what you’re doing to help yourself, etc. Even if talking about these things is embarrassing, it’s crucial that your doctors have all the facts.
2. Write down questions before you go so nothing is forgotten: Inevitably, especially with how busy most healthcare providers are, they won’t have enough time to sit around while you fumble around in your brain fogged state trying to remember what you wanted to ask them about.
3. Thoroughness on your part is important: You might think something is of no consequence, but it could be important to your doctor. Don’t leave anything out when describing your disease and your life.
4. Educate yourself: Most doctors do their best to be informed about your disease, but you may very well know more about it than they do. Don’t be discouraged by this. Doctors don’t live with your disease 24/7 like you do. So understand your own disease so you can be a partner with your healthcare team.
5. Don’t settle for whatever the doctor tells you: They might be wrong. If something they’re telling you just doesn’t seem right or if your gut can’t let go of that bad feeling we’ve all had, don’t ignore your concerns.
6. Challenge your doctors: Some may become offended, and if they do, it might be time to change providers. Most will be grateful that you’re an informed patient, and when you ask questions or make suggestions, your doctor might be willing to entertain different ideas.
7. Figure out who’s the most supportive person on your healthcare team: Inevitably, one or two doctors, nurses, or other providers will “get it”, or they’ll be more willing to go to bat for you. Once you know who these people are, who you can count on when times are really tough, use them. Let them help.
8. Find a support system: Groups exist for pretty much every condition out there. It might take a while to seek out “your people”, but once you do, learn from them. In return, teach them. These groups make you feel less alone and can be a valuable resource with their personal experiences.
9. Be persistent: If you don’t hear back from your doctor, keep at them until you do. You deserve to get the care you need, but you might have to push for it.
10. Change providers if necessary: Sometimes things just don’t work out. If that’s the case between you and your doctor, don’t continue to suffer. Hopefully other healthcare professionals are in your area. Use them. You can always go back to the first one.
11. Learn about your treatments and medications: The doctor won’t be standing next to you all the time. You will have to be the one who notices side effects or when the medicine isn’t helping. So know what the treatments and medicines are supposed to do and what the potential problems might be.
12. Don’t forget about the mental side of things: Especially when dealing with a chronic illness, there’s a huge mental component to your condition. Just because no one can see it doesn’t mean it isn’t there. Ignoring depression, anxiety and other mental symptoms will only make your life worse.

Do you have other tips for how to advocate for yourself? Leave them in the comments below!