When you’re stepping into the world of chronic illness, a diagnosis isn’t always an easy thing.
First, you’ve got the process of getting diagnosed. This isn’t the same as figuring out if you’ve got an infection; take a culture and get the results back in a few days. While some of them do take a simple blood test, many Syndromes are much more complex and go on a sliding scale. They can often mimic other diseases or conditions or be hidden under other co-morbid conditions. When you condition is on the rare side, it can create even more hurdles as you need to find a physician familiar with what you’re experiencing. All of this together makes the nature of the process potentially frustrating and exceptionally long.
Second, you have the emotional and mental impact that comes with a chronic illness diagnosis. While short term problems are nothing to shrug off, a diagnosis of such an illness like Ehlers-Danlos or Fibromyalgia or Marfans brings with it the necessity to change the way one looks at their own life from there on out. It becomes something that has to be adopted into many aspects of daily life.
When Pandora’s Box Opens…
It was said that when Pandora disobeyed the orders from Zeus and opened the box, all manner of dark and malicious things escaped, but Hope remained safely inside…though in some versions Hope is the last thing that flies out as she cries. The idea of hope has a lot to do with my analogy to the Greek myth.
There is an aspect of relief and hope when receiving a diagnosis, even if it’s not what you would prefer to hear. You finally have an answer for experiences or pain you’ve endured. You get to go over a plan of attack that can help to manage your symptoms knowing better why they’re appearing. Sometimes most of all, you stop feeling so crazy that nobody knows what’s wrong with you. You finally have answers after all this time and effort.
But that is also a double-edged sword because you also lose some hope. When I got diagnosed with hEDS…there was no more hope of getting better. It becomes learning to look forward to making certain symptoms better for as long as we can. Turning your hope towards abstract concepts of “in the future some day someone will hopefully discover something” rather than being able to research cures. I can’t begin to explain what a blow that is. I had to accept that I was going to slowly degrade no matter what I did…or didn’t do for that matter. That many things I was hoping physical therapy would allow me to return to, were no longer considered safe or advisable for someone like me.
I felt like I was grieving for a part of me dying, and there’s days that I still do.
Is It Better to Know?
Many that get a diagnosis that is less than ideal have thought to themselves..is it really better to know? It feels as if it was better before I knew. The short answer is of course it’s better to know! Whether the answer is a fixable problem or a problem that can only be managed, it is better to know. So why can it feel like the worse thing in the world?
It’s that grief thing. Because lets face it, most of us don’t like change in the best of circumstances and when we choose it. Here we are, trying to better our circumstances, and you get a pat on the shoulder with a “Sorry, you’re fucked” and sent on your way. Okay, so it’s normally not that harsh, but it can certainly feel that way in the middle of it. You grieve your hobbies, your independence, your health, your future, your dreams and goals, and the idea that you’ll get better. And you wonder how it can feel like the worst thing in the world? Really?
Imagine for a moment, the last time you went to a physician with a serious concern. Maybe for you it was the flu. Maybe it was a sprained ankle. Whatever it was, now imagine that you are told the test show nothing is wrong with you, just rest and it’ll get better. Except after a whole month, you feel just as bad. You go to doctor after doctor for a few years and finally someone recognizes what’s wrong. HOWEVER…there’s no cure. Sorry. You’re just stuck with whatever you’re dealing with right now, they only thing they can do is help you deal. Would you have handled it well? Do you think you could work and maintain a healthy social life?
So of course it’s going to feel pretty terrible.
Don’t Let It Stop You
Though hope can be dim, never think that it’s out completely. Join a support group to find what things others going through similar have found to bring joy back into their lives. Find a therapist that is knowledgeable of your condition or chronic illness in general. Look for aids geared towards helping you continuing hobbies that you love or find someone that can go with you to help ensure your safety. Go to conferences.
Do whatever you can to improve your situation. You were given the gift of a diagnosis, use it to better your life as best you can. Cry, grieve, mourn…then pick yourself up, dry the tears, and use that emotional energy to figure out what to do next. But dear, dear friends and family, remember to allow those you love that have been diagnosed time and space to grieve. We’re trying our best but going through so much that it seems like we’re trying to go through a mountain by carving out a tunnel with only a spoon.
