Coming to Terms With the Possibility I May Never Have Answers

It’s human nature, I think, to want to have answers. Explanations. A reason. When it comes to the field of medicine, it becomes even more of a societal expectation, to the point that it’s practically a requirement.

You aren’t truly sick if you don’t have a name for it. It’s science. If they can’t figure out what’s wrong, maybe nothing is actually wrong. Maybe you are too sensitive. Maybe you want attention. Maybe you are a hypochondriac.

Rarely do you hear, from friends, family or doctors, “Well, something is definitely wrong with your body. You are sick! Very unhealthy and that’s all we need to know for right now. Let’s help you. I’m sorry you feel so awful! We will do our best to improve your quality of life, ASAP!”

I mean, really, doesn’t that sound preposterous! But why? Why does it sound so unrealistic? It should be the norm.

 

I’m lucky. I actually have had a specialist look me in the face and say, “Yes. Something is very wrong with your body. I don’t know what it is. It’s not because I’m not smart enough, it’s because I’ve never seen anything quite like this. I don’t have the answers. But I believe you. I know you are sick. It is real. I feel bad for you.”

I went home and cried that day. Tears of joy. Relief. Happiness at being respected. Believed. Treated like a worthy human being, instead of like an object of ridicule. Like a lesser person, deserving to be mocked, simply because they’ve never encountered this. I will forever smile when I think of that day and that specialist. The day I was treated with humanity and dignity.

We need more doctors who are willing to say they just don’t know. That it’s something. They will work with you and try to help you, even if it’s never figured out. Because you still deserve a good quality of life, even if your blood work doesn’t scream a diagnosis at the lab tech.

We deserve it. I’ve discovered I’m not the only person who can’t find all the answers. Despite being made to feel, by some, like I’m the only patient, ever, who has a hard time getting a diagnosis, I am far from alone in this. My goodness, there are so many of us out there! I have some answers to some health issues. But I don’t have all the answers.

I’m a “mystery patient.” An “interesting patient.”  You never want to be the interesting patient. It’s great fun for a curious doctor. Not so great for the patient who is suffering from the dreaded interesting-itis.

So, I’ve had to come to terms with the fact that I might never have all the answers. The doctors might never figure my body out. I had to figure out how to live with that possibility, for my own peace of mind. One of the biggest things that has helped has been learning to realize that my health, my pain, my symptoms are just as important and worthy of respect as the person who has a name for theirs.

The first person I had to work on, to get that respect, was myself. I had to stop judging myself! Stop beating myself up, as though I was somehow at fault, or my body, the traitor, was doing something wrong. I felt like it was bad, like I was bad, because I wasn’t getting a diagnosis. I had to forgive my body for that. I had to start loving it again. Caring about it. I had to stop caring about what others thought of me, and had to change what I thought of myself.

Because, as I said, it’s human nature to want answers. Without answers, how can I trust my sense of pain? If it’s not proven, how do I know it’s real? If my massive amount of infections have no reason, maybe they aren’t as bad as I think they are… which  is ridiculous, because pneumonia is always bad. And chronic pneumonia is worse, whether  you have a reason or not. But, this is how the brain begins to think, when you’ve lived with the big question mark for so long.

I had to believe in myself again. In my symptoms, my feelings, my thoughts and my worth. Everything else followed, but I will admit, I falter every now and then. I remind myself I am just a person looking for help from another person who went to school because they wanted to help. I only have this life, with this body. I deserve the best quality of life I can get. You do too. We all deserve respect. Never forget it.

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Thinkstock photo via berdsigns.