Groucho Marx once said that he would never want to be a member of a club that would have him as a member…or something like that. I totally get that. I hate that I am a member of the yet to be cleverly named sick person’s club. Managing disease is a full time job. It takes up so much time and energy, and sometimes I feel like it is all I talk about because it takes up such a big part of my time. When I am juggling lab visits, doctor’s appointments, symptom diaries and procedures on top of diet and the disease’s symptoms themselves, it is easy to get lost in the disease. It can become difficult to focus on the other things in my life and appreciate them, because sometimes it feels like I don’t have time or energy for anything else. The hardest part of being sick is recognizing that focusing on the best things in my life is exactly why my disease takes up so much of my time. I want to be free of the symptoms, and have energy to be a good mom to my son, a good wife and friend. That is what is important to me.
We all label ourselves. I know a lot of sick people who wallow in illness; in fact I have been one of them. It is so easy to get down in the dumps when you are sick all of the time. I have been sick for ten years, the only break I have had from it was when I was pregnant (which obviously has its own set of symptoms.) Being sick for that long would wear on anyone. After a while, it becomes harder than a healthy person could imagine not to be swallowed up by the disease. Especially when it is constantly reminding me that it isn’t going anywhere, either by all the hoops I have to jump through, or by the symptoms.
I have to constantly remind myself that I am jumping these hoops for a reason. Even if I have jumped a million hoops for nothing in the past, all of the stuff I have to put up with may not be for nothing this time. I hope everyday that I recover, that one day I will resign from the club.
I am not Crohn’s Disease, or just any one thing. I know it would be motivational to say that I am thankful for Crohn’s having reminded me of what is really important, and it has taught me not to take anything for granted. I am not going to say that. It’s crap. I know myself well enough to know that I would not have taken anything for granted if I were healthy. I resent Crohn’s and that is why I work so hard to get rid of it, and that is why I have worked so hard to help make sure other people don’t have to know this disease. Although my resentment is an honest admission, if I wallowed in that, I would be a bitter and angry person all of the time.
Acceptance. I accept that Crohn’s is the hand I was dealt, but I have other cards, too. I am going to smile, and give myself the appropriate really long label for my life. So if I could help anyone else battling illness, I would say that no matter how much time and energy are taken up by your disease, don’t let one thing in your life define who you are. Disease is a huge part of my life, but I don’t want it to be the sum of my life, and I refuse to let that happen, and I don’t think you should either.