There is so much that goes into living with a chronic health issues, and a lot of it you don’t realize unless you live with it. Easily the worst part is when you’re trying to get diagnosed. I have seen over 30 doctors for one thing or another over the course of my life, and I spent years dealing with diagnosis. For a couple of years in high school, I saw orthopedic surgeon after surgeon trying to figure out what was going on with my ankle, and I heard so many variations 0f, “Well, everything looks normal.” Then, a few years later after my ankle had been taken care of, we realized that there was something else going on with my body, and I saw various doctors trying to address that. After all of this, I’ve learned a lot about what to do when a doctor doesn’t believe that your health issues is legitimate, and I’m using that to help you in case you’re experiencing this, too.
I will refer a lot to examples from arthritis and pain experiences, since that’s what I know. However, these do apply to anyone and everyone.
Trust your knowledge of your body above anything else. You know what’s going on better than anyone else, and just because someone has a medical degree doesn’t change that. You know that something is wrong. You know what that feels like. No one else does.
Ask them to explain their reasoning, and research it when you get the chance. So the doctor says, “Without a doubt, you don’t have x.” Why is that? When you have a chance, research their answer. “Your test came back negative.” What medical conditions test negative to that? Alternatively, they might say, “You have some symptoms for x, but not enough for me to think you have that.” Does that mean that you could have the beginning of that medical condition? Look into all of their reasoning when you get home so you can learn more about it and see if that gives you answers or points you in the direction of where to go next.
But you should also ask for their direction of where to go next. If they don’t think you have arthritis, for example, ask what specialist they think you should see instead of a rheumatologist.
Request another opinion, either at the same practice or another one. Again, you know your body better than anyone else. If you really believe that you have a condition that they should be treating, see someone else. If you feel that the doctor talked down to you, see someone else, especially if you are a woman. Doctors take female pain less seriously than male, something I have experienced on a regular basis over the past 15 years. The only people who have regularly taken my pain seriously are the doctors who a) are at Mass Gen, since they can see my medical history and know that I know my ish or b) have seen me regularly and know that while I deal with my health issues with sarcasm and a light tone, I don’t take my pain lightly. They know that my 6 is someone else’s 9 (5 surgeries, 6+ knee dislocations, and severe autoimmune arthritis tend to make you adjust your pain levels) and that half the time I function because I have no other options. For example, May 2014, I was in the ER in Tennessee after dislocating my knee at work and then continuing to work the rest of the day. The doctors were pretty chill about everything, treating me like they were humoring me, until they did an X-ray and saw evidence that I had dislocated my knee at least 4 times before. That was when they changed their tune, gave me pain meds, a giant brace, and told me that I couldn’t go to work and needed to be off my knee as much as possible. (Also, the fact that doctors take female pain less seriously is laughable considering what women deal with every month and that there are more women living in chronic pain than men.) Anyway, the moral of the story get another opinion. End rant.
Find out what tests can be run for more info (including imaging). For example, MRIs show soft tissue like cartilage and ligaments while X-rays don’t. Is it possible that the pain you’re experiencing in your joint is related to soft tissues? Research information like this because you might need a specialized test to figure out what’s going on. And try to keep your chin up and remember that even negative results are a step forward. X-ray shows no issue? Then your issue isn’t bone related. Blood counts are all normal? Then your fatigue isn’t from anemia. It’s like answering a multiple choice question with four possible answers and knowing that two of the four aren’t right; it narrows down the possibilities.
Keep a journal or record of your symptoms and anything that might affect them so you have facts to take into your next appointment. Doctors tend to ask so many questions that it’s easy to forget important things when you answer, so it helps if you have a record of everything. Plus, it’s easier for them to understand your symptoms when you can say, “Over a period of 2 weeks, my pain didn’t get below a 5.” Some things you might want to keep track of are the different symptoms you have, details of their severity (on the dreaded 1 to 10 scale, for example), the time of day you experience them, or things that make it better or worse. If pain is part of your chronic illness, download this free printable chronic pain journal! (PS – if you would like me to make another one for illness in general, let me know!) The most important thing is to have cold hard facts to take to your appointments.
Let yourself be frustrated with the process. This sucks, absolutely without a doubt. It’s so difficult emotionally and it is completely normal to be upset. Let yourself feel those emotions, but try not to dwell in them.
Practice self-care. Similarly, you need to take care of yourself physically and emotionally. Just because your orthopedic surgeon says that there’s nothing wrong with your knee doesn’t mean that you should run a marathon on it if it’s really bothering you. But you also need to take time to do things for yourself and do things that make you happy. Here are 101 self-care ideas in case you need some inspiration.