This has been a very hard post to write. I don’t like to admit my weaknesses. But I’m learning that I need to own this one, because I’m giving it too much power over me. It’s still more of a rough draft post, but it’s holding up my other stuff so I need to let it go.
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This may be the cheesiest video I’ve ever seen. So I’m going to make (or at least ask) you to watch it.
(h/t http://crohns-leavingtheseatdown.blogspot.com)
I’m sharing the video because I’m going to try and write about my Crohn’s disease. It’s always been a taboo topic for me in the past.
Like a lot of things in my life, my perspective is changing.
I remember when I got pregnant with AJ, we contemplated whether to tell anyone until after the first trimester. I think this lasted about a week before I realized why people wait – in case of a miscarriage. BUT, I thought, if I don’t tell anyone and I do miscarry, then we’ll be all alone dealing with it. That thought really terrified me. I decided that this was something I didn’t want to be alone in.
That’s the best analogy I have for where my head is on the Crohn’s disease. I do tell people about it, but I have a way of mentioning it without really talking about it. I think my resentment for the disease is so strong sometimes that it leaks through in my attempts to talk about it, and I probably intimidate some people when I bring it up.
And it’s not easy to talk about anyway, the symptoms alone make for difficult conversation even with the closest family members.
I’m also uncomfortable with the whole idea, because I keep reading about people that have far worse symptoms and stories. I’m humbled by the struggles they’ve been through compared to my relatively mild symptoms. (For an example, check this out – http://jasonandcrohnsdisease.blogspot.com/2012/05/i-think-right-word-is-ridiculous.html.)
Over the years, I’ve followed various discussion boards and blogs about Inflammatory Bowel Disease, but I never took part. I even shy away from the affiliated non-profit, CCFA. I thought that if I pretended it didn’t exist, the Crohn’s would go away.
But honestly, it’s lonely trying handle it by myself. And unfortunately with the nature of auto-immune diseases, loneliness is a type of stress that only aggravates the problem.
Okay, another video. This one is even worse:
Honestly, I’ve never met anyone as mean/clueless as the female figure in that video, but I’m very familiar with her. She has been talking in my head for years, the voice of self doubt that only leads to self imposed isolationism.
To be fair, I have heard one comment many times over the years – “But you don’t look sick.” <sigh> No, I usually don’t look sick. Thank goodness. But there was a time….
Since I was originally diagnosed, the concept of the “Invisible Chronic Illness” has apparently moved from the psyche of the patient into an actual areas of study. Look there’s even an awareness week- http://invisibleillnessweek.com/.
And yet I still feel guilty.
So, I’m going to share. I’m not shoving this off on you, and obviously you’re not obligated to read it. It won’t be the entire focus of this blog, but it’s a part of me, so it’s becoming a part of what I share.
And maybe, there is somebody else out there who has struggled alone that will find some comfort in reading my journey.
Merc,
I almost wrote “I’m sorry” but thinking about it, it seems such a strange thing to say. Rather, I empathize. I have Hashimoto’s disease (auto-immune hypothyroidism) and vitiligo (a rather innocuous gradual loss of skin pigment, also auto-immune) and I, too, have mild symptoms compared to many who suffer with these diseases. There have been times I suffered more, but I’ve never “looked” sick and I’m so fair-skinned nobody notices my depigmentation patches. But it still sucks and I have had moments of resentment as well.
I have only lurked on the boards because I wanted information, but I felt guilty saying anything because most people writing were way worse off than I and I felt guilty–who am I to complain?
No one in my family has ever been diagnosed with auto-immune disease so that’s pretty isolating too.
All of that is to say–you are not in any way alone in these feelings. It’s something you don’t want to share, but at the same time, you don’t want to be alone. Ambivalence is frustrating!
I’ll keep you in my prayers.
Jeannette
Thanks, Jeannette. It was really good to hear this. I am sorry about your conditions. I had no idea. But I’ve been often surprised by how many people are “lurking” out there with auto-immune diseases with symptoms that stay just off the radar.
I hope to find a balance with talking about and acknowledging the Crohn’s, without coming across as whining. On the flip side, I’m horrible about asking for help, even when I truly need it, so it’s tough to make this balance happen. We’ll have to see how it goes.
Prayers for you and yours as well.