The Blessing and Curse of a Diagnosis
By Victoria | @lemonsnlyme | May 23, 2018
The Blessing and Curse of a Diagnosis
We all want to get the proper diagnosis right? When we are sick we want to know what is wrong. We want a concrete name so we can better comprehend what is happening. Even if it's just a broken bone- name it! Name it so I can understand it, so I can treat it. Right? Right.
But, there's a dark side to finally getting a diagnosis, too.
Let me start this off by telling a little bit of my Lyme diagnosis story. When I finally got diagnosed with Lyme disease my doctor said to me: "I have good news and bad news. The good news is, you have Lyme disease. You finally have an answer for all of your years of suffering. The bad news is, you have Lyme disease." It was a complicated mix of emotions because I finally knew what the heck I was dealing with, but that came with a lot of baggage. Being diagnosed with any sort of chronic or complex illness, in particular, comes with a lot of baggage because treatment or management is often as chronic and complex as the illness itself.
I've been diagnosed with a range of other "things" since my original Lyme diagnosis. Hashimoto's (okay this was before the Lyme, but it's all connected)/autoimmune disease, chronic fatigue syndrome, mast cell activation disorder, small intestinal bacteria overgrowth, dysautonomia, endometriosis, and more to come. And with each diagnosis comes this wave of emotions ranging from relief to pure anxiety and fear about what the heck to do next.
I was talking to a friend recently, which is how I realized I wanted to write this post. She has dealt with some health issues over the last few years. Her symptoms seemed intense, but she got a fairly simple diagnosis and treatment plan originally. Lately, her symptoms have flared up with new ones creeping in. So, she went to a new doctor who reviewed her case and medical history, and realized she was dealing with something far more complex then the original doctor had diagnosed. She felt a relief of someone finally helping and having answers, but a complete overwhelm with the new diagnoses and treatment.
That is often how it goes. FINALLY, someone who listened and FINALLY a name for my symptoms! Finally being able to name symptoms is something most don't often realize the importance of. Being able to name them allows others to believe you. It makes what once seemed so intangible, tangible. You can't argue with a doctors diagnosis. If a doctor says you have something, society tends to accept it. (We aren't getting into that whole other argument today, I'm strictly talking about believe-ability here today). Once you have a diagnosis for symptoms, it makes it more tangible, understandable, and believable for those around you (and often times yourself, as well). It makes you feel (and seem to others at times) less crazy because you can open a medical book and point to what you have. Science has proven your feelings/symptoms are real.
But after that initial relief, the reality sets in. Shit... I have XYZ diagnosis. Shit... I have to treat/manage it. Shit... what do I do now?! For chronic and complex illnesses this can feel like a punch to the gut, because, like I said before, treatment is often just as chronic and complex as the diagnosis itself. There are tons of treatment options that may or may not work. That you will have to sift through and try to see what works for your body.
There will be a lot of trial and error. Which doctors will be best? Which medication or supplements? Which this, that, or the other?! And if it's a chronic condition, you have to start accepting that aspect of it and acknowledging you'll be living with this for a long time, maybe for life. Even just a broken bone can elicit this fear and frustration, though, because you have to go through the treatment- wearing the cast, not being able to use that body part for an extended period of time, adjusting your life around the injury, dealing with the side effects (itching from the cast or medication side effects).
So, yeah, thank goodness I know what I'm finally dealing with. Thank goodness I know what crazy animal these symptoms are. I can name it. I can tell others and they can google it and a definition will come up and I'm not crazy. But shit, now I have to figure out how in the world to treat it.