How do I stay positive even though I have a chronic disease?
First, my disclaimer would be that I tend to be a fairly serious person who is often charged with ‘brooding’, I guess I have resting b**** face or something. Despite this misconception, many of my close friends/family know that I am a quietly positive person. What many don’t understand is that my energy levels, like so many others with IBD, are always so low I consider it a precious resource that must be used judiciously. Whatever coffee induced energy I do have is spent on being functional, studying and getting through the day…everyday. I can assure you that never feeling rejuvenated after a nights sleep or a nap will wear on anyone and its just hard for me to spend the extra energy in being a bubbly person. That may sound ridiculous or self pitying to those who don’t know me but I can assure you that I never seek anyone’s pity.
So over time my relationship and outlook on Crohn’s disease has changed dramatically. From the ages of like 12 to 18 I was scared, embarrassed and ashamed. From age 18 to 22 or so I was angry. From 22 to December 10, 2014 I was just living my life not giving it much attention. From December until now I have felt scared, angry depressed, grateful, proud and sorry. I think that experiencing a range of emotions, especially as the disease changes, is absolutely normal for everyone, but particularly young people. There have been many times when I did not have a wonderfully positive outlook on life but as my maturity level has changed over the years my outlook has become more positive.
So how do I try to go about being positive? First I don’t allow Crohn’s to define me. Before I am a patient with Crohn’s or an ostomate I am a son, a brother, a friend, a student, a reader, a research junkie, a music lover, someone attempting to get back into exercising and a hundred other things. I am not ashamed of being an ostomate or having Crohn’s, but I only allow them a small proportion of how I chose to define myself. I work daily to keep it that way. Others are comfortable allowing IBD to make up more of their identity and they seemingly are always discussing IBD with everyone and inundating themselves and others with information about IBD and that’s great! These people chose to allow IBD a greater importance in how they define themselves than I and I think that whichever way works for you is great and you should stick to it. But for me try to think about my disease very little after writing one of these posts. Sure, it will rear its ugly head and demand more attention at times but I always try to remember how fortunate I am to have a life filled with loved ones and the opportunity to pursue activities that I enjoy.
Additionally, unless I am actively tracking a symptom I do not keep careful timelines of my disease. What do I mean? Well lets hypothetically say I have been felling good for a week without pain or blood. Some people would think “wow I haven’t felt sick for a week” whereas I choose to think “wow I have been feeling good these days”. And I leave it at that, I never explore how long it has been since I last felt sick. This is a subtle but important distinction that makes me more appreciative for the good days instead of dreading and expecting to feel sick again. This keeps me grounded in the here and now. If I spend time thinking about how long it has been since the last time I felt sick I invariably turn to wondering how many more decades I have to live with Crohn’s. For me its just more prudent to take a day by day approach rather then carefully tracking how long it has been since I last felt sick.
In summary I stay positive by filling my life with loved ones, activities I enjoy, feeling grateful for good days and ultimately only allowing Crohn’s to represent a small portion in how I chose to define myself.
How do you stay positive?