Once in a while I have occasion to tell someone new about my experience living and working with symptoms associated with Crohn’s Disease. These days, it comes up when telling someone about this blog. One thing I love about having these conversations is the safety it creates for others to talk about something in their life they normally keep hidden. For most of us, it’s a coming out of sorts, and usually done with some caution.

I’ve noticed two themes in these conversations:

1. There are many more people living with various illnesses than you’d ever imagine. Though we feel alone we are not alone. I think that sharing this aspect of our lives when it’s “safe” helps create a sense of normalcy instead of isolation. My hope is that conversation by conversation we can help reduce the stigma attached to illness, as well as the misunderstandings about their causes and impact.

2. We ALL make assumptions about the kinds of symptoms someone is dealing with as soon as we hear a label we recognize. In a way, doing this contributes to the very issues of discrimination we find ourselves combating.

It’s the second I’m most curious about today. Autoimmune illnesses are especially tricky and as much as we might want to nail down the diagnosis in order to figure out what medicines or lifestyle changes we need to make to get better, it doesn’t seem to be that simple. There seem to be as many contributing factors, side-effects and impacted body parts as there are people with the same diagnosis.

For example, I’m taking the exact same medicines I did a few years ago, but now I’m in remission and for a couple of years I was not. What’s the difference? Well, I fired one doctor and found another with a much more consultative approach; I read a series of articles in the Crohn’s/Colitis Foundation’s magazine about non-compliance; and started working with a “Network Care” doctor. Is this why I’m in remission? Maybe. More than likely, it is the years of learning, gauging, experimenting, adjusting and choosing that has had the cumulative effect.

Even my “success” story can be misleading. I remember the years that I wasn’t feeling well and someone would tell me what worked for them. I always felt a mixture of hope and oppression, a feeling of judgment that if only I….I’d be better too. So I know that just because I got to this place in my life with my illness doesn’t mean another woman with the same diagnosis and the same self-care pathway will have the same results. We would be wise not to judge ourselves or others, but instead explore the many pathways to healing. Let’s keep talking about it.
Joan