If This Is As Good As It Gets, Will I Be Satisfied?
Acceptance. It’s a thing and I’ve done it. I get it. I have Crohn’s disease and I can accept that. Do I like it? Nope. But I can accept it.
What I’ve been thinking about is what it means to be satisfied. I am not satisfied with my life as it is right now so what does that say about me? Does it mean that I have in fact, not accepted having Crohn’s disease? Are satisfaction and acceptance one and the same, or are they two separate things?
See: I’ve been sick with IBD since I was a baby. I’ve been in and out of the hospital since I was 10 months old.
My problem is that I am occasionally angry. I’m angry that I grew up during the time before biologics. I’m angry that long-term steroid use, 5 ASAs, and surgery were the standard of care during my childhood. I’m upset that biologics were only approved when I was a young teenager and that getting them as a pediatric patient was more of a struggle if not impossible. I’m angry that I was not able to try them before my surgeries because of the home I grew up in, the doctors that I had, and all that played into what it was like to be a powerless child at the mercy of adults. Adults who don’t have your best interest at heart or who do not have the understanding to help you.
Long-term steroid use did their damage and eventually failed me. Azathioprine never worked and later I found out my TPMP enzyme activity was low and so I couldn’t use it effectively anyway; it would be dangerous. I am angry that I had 3 emergency surgeries and endured many complications. I’m angry that even if today I achieved a deep remission that all the permanent damage that has been done up until this point cannot be reversed. No matter how well-controlled my Crohn's disease gets from this point forward I will always deal with the damage that has been done in the past.
I was not one of those "diagnose early and treat aggressive patients." I was a diagnosed way-too-late and hardly treated patient and now I live with the consequences. That can make me angry, jealous, and resentful.
I am angry that I have another digestive illness (chronic intestinal pseudo obstruction) as a result of having Crohn’s disease, and even when my Crohn’s disease is doing as well as it ever has, that I still can’t feel well. I can’t feel good because this stupid other illness is debilitating.
If my quality of life will never improve from here, will I be satisfied? I don’t think so.
What if this is it?
What if the best that it gets is this?
My body a mess - having been cut open in the same spot a few times; my guts spill out of their abdominal cavity. I have adhesions from surgeries and a consistently dilated bowel from pseudo obstructions so that my daily life is a day of fatigue and knowing that I am going to feel pain and nausea as soon as I have a bite to eat or a sip to drink. I will wake each day to weigh my options - take a shower and use all my energy for the day or don’t shower to save some energy? Eat and feel pain or put off eating until later so that I can do more than just lay down? Go to the grocery store and use all of my energy or conserve what little energy I have to visit a friend? And if I decide to attend a family event, a party, or go anywhere, I do so knowing that it will take a few days of rest to recover.
That isn’t right.
This is not right!
I don’t know if I can be satisfied with that.
What about all that has been taken away from me? I missed so much time from being in the hospital or being sick. I have had to lose jobs, miss school, change career paths, and be out of work. I have missed so very much. I accept it. But will I be satisfied if my life continues the way that it is right now forever?
There is no point in being angry about the past and I know this. I cannot go back and undo a thing. I can’t be mad that things were different back then than they are today. For the most part I am hopeful and thankful that patients diagnosed today will not endure a lot of what I had to endure. I am optimistic about the future of patients diagnosed with Crohn’s disease and ulcerative colitis because I know how things used to be and I can see how far that we've come, and I know that we will get even further than we are today.
I know that acceptance is something you practice and that you don't just get there and stay there. Perhaps acceptance and satisfaction do go hand-in-hand and I actually have a lot further to go than I thought I did in terms of accepting things? I just know that I'm not satisfied with things as they are right now. I can accept having Crohn's disease but I don't want to accept that this is as good as it gets. My quality of life is not acceptable to me.
I won't accept that until I know that I have to.
I have so much that makes me happy right now. I have found the love of my life, I have a roof over my head, food to eat, and a car to drive. I have people who love me and goals to achieve. But I want more. I want energy; a day without fatigue. I want to be able to eat without pain and without having to lay down because of the nausea. I want a full year without being in the hospital. I want to get out of the house because I have something fun to do and not because I am on my way to a doctors appointment. I want to get married soon and have kids and move past feeling stuck. I want to catch up on lost time.
What type of IBD have you been diagnosed with?