My fears as someone with chronic disease.

Several days ago I was asked an unintentionally thought provoking question. What scares you as a patient with chronic disease? Well nothing scares me, the end…… Okay jokes aside for a second. I am not above admitting to having fears about my health, we all have them or someday will, chronic patient or otherwise. This question was raised after discussing procedures I had during my hospitalization while we were determining if I had an infection. Med students have a strange sense of small talk. No need to get too into it but the bottom line was procedures don’t really bother me. Now they weren’t fun, some were painful and there are many I certainly never hope to experience, but I found the procedures just an interesting way of gathering more information rather than something to dread.

So back to the question, what scares me? Early in my diagnosis I was fearful of uncomfortable physical exams, procedures, undergoing batteries of tests, surgeries and spending my life on medications. These things don’t really bother me anymore, I just had to accept some inconvenient truths. Couldn’t pass up a potential Al Gore reference! You see those things I’ve listed are an essential part of my life. I have a chronic condition. There is no cure (thats what chronic means right?), nor do I expect one in my lifetime. My health has ups and downs, it is guided in part by trial and error, my doctor and I deal with the occasional surprise as they arise and I hope for the dreamcalled remission. I’m really okay with that. It took years to be comfortable saying it, but it’s okay. And all the procedures and unpleasantries are worth it to help keep me going!

So how do I view life with “my” chronic condition? I’ll start in abstract sense then get a bit more concrete. Imagine a beautiful day where people are outside walking or jogging in a race. I see myself out there alongside them just with one difference. In the midst of this actual race I’m trucking along on a treadmill. If you’re free of a chronic condition, you’re just that, free. You walk and will arrive to a destination whereas I keep walking without really going anywhere. Will I reach a destination? Do I have one? When things are going tough that’s how I feel about my health. Stuck. Not knowing my destination scares me. You see most people go to the doctor with a problem and hopefully leave with a solution or at the very least a plan to achieve something. That’s what both patients and doctors like, what we all want to happen! I want my future patients to have a destination, good health they are comfortable with. Now you’ll say hey wait remission is your destination! You’re right it is, but its not quite as simple as that. There’s no checkpoint like in a video game that pops up saying congratulations you are now entering remission! This is life, it’s something you feel out. Remission, for me, is noticing hey my energy levels have been pretty good or I haven’t had chills or blood or pain this week or month. Remission is something you notice after you’ve been in it for a while. Just hope it stays that way!

The treadmill analogy captures this abstract aspect of my fear, never really having a destination. I have very little fear of things like procedures or medications etc so what are more concrete day to day fears I have? They go something along the lines like this. Do I have enough strength to get through the day? To be a good student? To become a doctor? To be a GOOD doctor? A good husband? A good father? While we’re at it, where is the closest bathroom? I am fearful of falling short because of my chronic condition. Fear of inadequacy I think is a ubiquitous fear. We all have it, I just experience it through the lens of Crohn’s. I will tell you right now, I do have or somehow will find the strength to be a good student, to become a good doctor, to be a good husband and maybe father and you sure as hell better believe I will always know where the closest most private bathroom is!

So I went ahead and put it my thoughts out there. If you’re a patient with Crohn’s comment with what are your fears? Are your’s similar? If you’re a mom, dad, brother, sister, friend whatever of a patient with IBD what are your fears?

2 thoughts on “My fears as someone with chronic disease.

  1. Since I read your post on your fears with your crohn’s I have pondered that for a bit. You see, I am a mother of a 23 yr old son with crohn’s and I have many fears. I fear that his disease will hinder him from experiencing all that he wants in life. Right now things like fishing and hunting, both of which he loves, are out of the question because of the need for a bathroom to be close. I fear that he won’t get married and therefore not become a father, because there are many women out there that may not want to “deal” with a man with a chronic illness. I fear that he will forever be struggling with financial problems due to this disease because of the expense of the drugs and hospitalizations. I fear that he may lose a job that he absolutely loves because of a huge flare, drug changes or surgery. You see my fears are based off of things that have already happened to him. Crohn’s already has costed him girlfriends, a job, a social life, pure independence, absolute freedom and financial stability. There are days that I have thought that it would be easier on him if he would have lost a limb. He would have adjusted and then been able to move on. With crohn’s you never know when it will rear its ugly head.

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    • Terri thanks for the comment, definitely a perspective I dont really know much about as I am not a parent. I plan on having my mom write a post I am sure some of her fears will mirror yours. With regard to financial/employment things you should discuss with your doctor the americans w/ disabilities act (ada). Your son has protections through that legislation you just need to talk w your doctor. Im going to start a series on support systems coming up that may be of interwest to you. Your son is a strong guy, circumstance makes him mentally tough, he has to be. Gotta hold out on the dream he’ll break through this eventually and get it under control. Once he does life w/ crohns can be quite normal

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