One thing that is very real and very frustrating in the world of chronic illness: Misdiagnosis. The more rare your disease and more complex your medical case, the more likely that you will be misdiagnosed before someone gives you the “real answer.” The truth is that diagnosing patients is complex and, frankly, it’s really hard. Most medical tests don’t lead to a single diagnosis, but rather suggest a list of possible answers that must then be compared to the patient’s list of symptoms. And the fact of the matter is that most of us in the chronic illness community have struggled with this reality.
There are many limitations to the process of getting diagnosed. The provider’s medical knowledge is a core factor. If the provider doesn’t know about an illness or disease, they will never diagnose you with it. Doesn’t matter how good a provider they are. And every provider has a limit to their knowledge. No one can know everything. That’s just not possible. Medical biases often get in the way of getting a correct diagnosis. A provider might believe that people with a particular disease look a certain way and thus will never diagnose someone with that disease that doesn’t look that way. Their are inequities in health care. Being female or from a minority means you are more likely to be dismissed or misdiagnosed. Being able to afford diagnostic testing will have a dramatic impact on your diagnosis. There are so many factors that have to line up right for you to get the proper diagnosis.
So, what do we, as patients, do about this problem?
First, I think it is important to remember that a diagnosis never defines who we are. When you receive a diagnosis or a provider chooses to revoke one; absolutely nothing about you changes. Consider a diagnosis the way that you would consider the stickers on produce.
Look at the bright green gleaming peel. Those beautiful apples snuggled in the store’s bin. Next to them, in a second bin, lovely oranges. Each one with their little stickers are ready to be carried to the register and enjoyed. Which should you buy? Each is so wonderful. Look again at that little white sticker on the apple and peel it away. Put it on the orange. And take the orange’s sticker to give to that now naked apple. What happened? …Nothing. That orange is still a lovely orange. And that apple is still a beautiful apple.
Our diagnosis is the same. That label changes nothing about you. Really, not even a little. Put a bipolar sticker on your forehead and it changes nothing about you. You’re still the same lovely person. Take off that sticker and replace it with ADHD. Changes nothing about who you are. You are still the same beautiful you. This label changes you as much as those stickers changed the before described fruit.
Now, that isn’t to say that these labels don’t matter. Because they absolutely have profound effects on our lives.
We need them so the insurances will pay for our treatments. If a doctor cannot tell an insurance why they are prescribing medications and treatment, the insurance isn’t going to pay for it. I think that’s pretty fair. When the insurance asks “what’s it for?” the doctor answers by giving the insurance our diagnosis. This diagnosis will determine which services we will qualify for based on standards of practice and insurance plan coverage.
The diagnosis also gives providers the broad strokes of our illness. We are people and we do not function the same just because we have the same diagnosis. But by meeting the requirements or criteria of the diagnosis means that there are certain things that are going on with us. That will guide them in what kinds of medications and treatments they prescribe. Your diagnosis is a way for different providers to talk to each other and tell each other the basics about what is medically going on with you.
So, having the correct diagnosis matters.
This is something that we can easily drive ourselves nuts worrying about. We can live in a state of fear and anxiety, always asking ourselves: is this the real answer? But at some point, we have to let that go and accept the answer that we are given. How do we get there?
I think the first step is to just ask your self if the diagnosis feels right. Once you have the diagnosis, go and do some research on it. While reading about the diagnosis, do you feel like you are reading about yourself? Do the symptoms line up with your experiences? Does reading about this diagnosis make things in your life make more sense? If so, then you probably have the right diagnosis. But if you read about the diagnosis and you don’t have that experience, you might want to get a second opinion.
When I was diagnosed with ADHD, I was like: “What? Really?” But then I did some research on how ADHD presented in adult females and I felt like I was reading a description of my life. I suddenly felt like things made sense and were clear. I had the same experience when I was diagnosed with Elhers Danlos Syndrome. I didn’t know what it was. But when I read about it, I felt like I was reading about myself. I found myself crying while reading articles because I finally felt like I was being seen. I have never doubted either of these diagnoses. I’ve just always known that they were right.
Once you have accepted the diagnosis, is the treatment making you feel better? If you have the correct diagnosis, then the treatments for that diagnosis should improve your life. If you are seeing no improvement after a long period of treatment, it might be time to reconsider your diagnosis.
If you haven’t been diagnosed by a specialist, consider seeing one. General providers are a great place to start, but it is important to remember that they are generalists and the nature of that is that they will only have the basic knowledge set for any given area. Thus, they are more likely to make a misdiagnosis. This is especially true if something uncommon or complex is involved in your case.
In the end, as uncomfortable as it is, we have to have a certain amount of faith in our providers. This is why it is absolutely essential that you only work with providers that you truly trust. Remember that you are employing them and if they are not helping you achieve your medical goals there is no reason that you shouldn’t fire them. Don’t be afraid to change providers if you feel that you are not being heard, they are biased or if you don’t completely trust them. After all, we only get this one body in our life, it is important that we only give it’s care to those we trust fully.