When I was in the middle of the flare that eventually led to colectomy, my GI finally agreed to refer me to an IBD specialist. This was a necessary decision for both of us, as I wasn’t getting any better and it was clear that my GI (who didn’t specialize in IBD) had no idea what to do with me. At my last appointment with him prior to seeing the new doctor, he for some reason thought it would be helpful to engage in a disturbing conversation regarding surgery and my future. One of the things he said stood out to me so much that I still find myself recalling it three years later. He told me that if I did require surgery, obviously I would probably want a jpouch, but if I kept the ostomy for at least a little while, it would be easier for me to have kids. He then made a grimace and said, “But if you have an ostomy…” Yeah, I got it. No one would ever want me. I thought it was ridiculous and insensitive at the time, but considering it’s been over two years since I had surgery and I’m still single, maybe he wasn’t far off with his assessment. (Or it could be that getting my life together has taken top priority over dating someone.) Clearly, his expectations for my life post-surgery were pretty low.
What people expect of me and what I expect of myself seem to be worlds apart sometimes. During a Twitter chat yesterday, I mentioned that when people find out I have an ostomy, some of them act like it’s some sort of devastating crisis. It usually isn’t, although when I immediately leaked after changing my appliance this morning, it temporarily felt like one. Most of the time, I don’t think of myself as abnormal or disgusting or whatever negative things some people think about ostomates. Sometimes, though, it’s hard. It’s especially hard when I see how other people’s lives are going and think, if I’d never gotten sick, my life would probably measure up to theirs. It can be really difficult, especially in the social media age, to see everyone getting ahead of you in life, especially when all you want is to be “normal.”
So what might have happened if I hadn’t gotten sick? I’d probably be married with kids and a job, although not necessarily a job I liked, as there’s no way I would have discovered my new field if it hadn’t been for my health issues. I also might not be married to the right person– plenty of people, whether healthy or sick, end up in bad marriages and get divorced. What if I’d gotten sick years later, after having children, and my spouse left me? What if I’d had kids before knowing about all of my health problems, genetic issues, etc.? By the time I found out, it could have been too late. What if my pulmonary emboli and infarction happened when I was pregnant? There are so many “what ifs,” and most of them aren’t good.
I’m not always one of those “blessings in disguise” or “everything happens for a reason” types of people. A lot of the time, it breaks my heart to not be normal. Sometimes I just want to be like everyone else, even when I know that isn’t possible. But after all of this, I’ve started to think that maybe I’m just not meant to be like everyone else. Maybe someday in the future, I’ll look back on what I expected from my life and be so glad it didn’t turn out that way. I have to believe that good things are ahead for me, even if they aren’t necessarily the things I had expected they would be.