"There is no cure for Superior Mesenteric Artery Syndrome."
"There is no cure for General Anxiety Disorder."
"There is no cure for Malabsorption."
"There is no cure for Myalgic Encephalomyelitis."
To hear your diagnoses is a blessing and a curse. You finally have a name for what is happening to you, but you then learn of the treatments, survival rates, quality of life, etc. Your hopes begin to fall a little bit at the thought of the journey ahead, but at least it will go away right?
Wrong. Well, wrong for those of us that have disease with no cure.
To hear those words is soul crushing. What do you mean no cure? I have to live like this forever? What is the best that I'll ever be able to feel again? Question after question knocks around in your head, but you can't organize your thoughts well enough to ask the doctor a single one.
The first time I heard no cure, I was 115 pounds and barely able to keep down plain rice. I remember my heart in my throat and staring at my mom with wide eyes as my doctor explained to me what my condition was over the phone. I stood in the middle of my grandparent's living room barely able to breathe, much less process what my doctor was saying. I remember my mom taking the phone from me and my grandma forcing me to sit down on the couch. My stomach ached- at the time that was normal for me. What were we going to do? Was I going to die? Am I going to be this way forever? The terms ensure, feeding tube, contrast, and hospital spoken by my doctor are ingrained in my memory.
Hearing those words from a doctor is still earth shattering. Knowing you'll never return to the person you once were is difficult to handle. You begin to mourn the death of the person you once were and accept your diagnoses. You listen to your doctor, letting him/her tell you what they can do to treat the symptoms and hopefully put the issue into remission.
There isn't a magic pill or shot that can make it all go away like you were hoping, but at least it's something. You begin to go through the stages of grief over your new illness, and yes I can name every one of them from each time I was diagnosed. I am currently going through it again, now on my own away from home.
The acceptance of not having a cure comes slowly as you put together a plan with your doctor, or doctors if you're me. You take the medicines, follow their instructions on living and diet adjustments to the best of your ability, and try to be the best patient possible. You go through tests, infusions, nasty treatments, side effects, and more, all the while tracking if you're better or not.
For some, they slowly see improvement, even if it's after many twists and turns. The plan works, and you can finally put together a way to stay in remission. Your quality of life improves again, and you feel like you're on top of the world.
I feel this way about my SMAS. I am back to a healthy weight, I eat (mostly) pain free, and at one point was cleared to exercise again. I still have medicines for when it aches, I deal with the fact the my stomach shrunk while I had a feeding tube, and other little factors left over, but I am currently in remission. It isn't gone, but it's quiet for now and hopefully will continue to be for a long time.
Although, what went into remission could come back with a vengeance. There is always that threat of if your medicines quit working, if you come down with a nasty virus and start sliding down hill again, or if your body just decides it wants to misbehave again. In the back of my mind I know that weird circumstances could put me back into an SMAS flare, but for me I have a way to get it under control again and an amazing doctor who will do anything to help me.
This is all you can do with no cure though. Continue to work with your doctor to find treatments to help control the symptoms or slow down the damage, find ways to give yourself the best quality of life, and hope that any research that is being done helps. You have good days and bad, both mentally and physically. I've watched my mom go through the process of no cure, family, friends, and now myself.
Although there is no cure for your diagnoses, there is still hope. There are medicines that can help, there are doctors out there who are willing to help you, and lastly there are people out there willing to love you through it.