When looking for answers to a health issue, without really thinking about it, you might have this idea that once you know what it is you can cure it, or at least treat it and make it significantly better.
So, when the time comes after months or years of tests and unanswered questions when you finally get an answer, you don’t expect to hear that there’s not much you can do about it. You don’t expect to find out that there is no cure. You know that can happen, that it’s possible, but some place deep in your mind, you don’t want to acknowledge it. This information – that they know what it is but still can’t help you – is like a 20-foot brick wall toppling down on you, and, written on each brick is a new, complex emotion. Each one crashing down on you until you are buried in the rubble of your inner avalanche.
The main feelings, from the moment you have answers to the moment you realize it doesn’t make much difference, goes like this:
Elation. You don’t have to wonder if you are “crazy” anymore. You don’t have to prove yourself to doctors or family or yourself. You can finally research and understand the specifics of what your body is doing and why. You can get a glimpse into the future progression of your illness. Hooray! Answers!
Grief: You’ve gained a diagnosis and have lost the possibility of getting better. In that moment, you’ve lost the dream you’ve played in your mind a thousand times before. The one that kept you hanging in there, that gave you the strength to keep trying. That hope for a healthy future full of infinite possibilities. Being able to function normally again. It can be devastating to lose that dream. You feel like you’ve lost a part of who you are, who you were meant to be. You’ve lost hope. Hope for a cure. All of a sudden, that future dream is shattered. Gone. That part of you, the future you, who you’ve envisioned a thousand times in your mind, crumbles like the imaginary world it was.
Acceptance: This can take some time. Grief always has its own timeline. It’s no different in this situation. Slowly, though, you begin to come to terms with your new truth. You acknowledge that it is good to at least know. Having more information means being able to make smarter treatment decisions. Knowing can also help you work around possible future symptoms, be two steps ahead. Be prepared. Be proactive instead the reactive way you had to live, pre-diagnosis.
Reframing your dreams: Next comes the time when you need to re-evaluate how you will proceed with your life. How you will find happiness. Examine what will make you happy. What is most important and what is least important. Figure out ways to achieve your goals. Choose which goals can be saved and which ones must go. It’s important at this time to remind yourself that even healthy people cannot fulfill every dream. We all have limitations. We also all have choices. You start to realize you can be creative in how you live your life. You can be the tailor for your own world and let it work for you instead of against you.
I think some grief will always remain. It will pop back up during a bad flare-up, or sometimes when you least expect it to. Seeing someone else who appears to effortlessly be living the life you had drawn for yourself can cause the grief to come back in waves of despair. It can appear when you have to say no to an incredible opportunity, or feel like it’s suffocating you when you see how your illness is affecting your loved ones, causing them pain. But, because you’ve worked through the other steps, you can work your way back out of the grief. You can take back the power you do have and use it to find a new entrance. A new door. A new way to live your life to your fullest.