Last week, you read my interview with my husband about what my illness has been like for him. This week, I interviewed my 23-year-old daughter, who comes with her own unique viewpoint.
Do you remember me before I was diagnosed? If so, what was it like, compared to after?
I honestly don’t remember what it was like before you were diagnosed.
(My comment: My daughter was just 6 when I was diagnosed, and I had spent almost an entire year in bed before getting an accurate diagnosis. It’s not surprising that she doesn’t remember me healthy.)
When did you realize that I had an illness that most people don’t ever have?
I don’t really remember realizing this, either. I think for a long time I didn’t know there was anything different happening because it was what I was used to.
(My comment: It’s interesting how children accept the circumstances of their lives and don’t realize their family dynamics are different than others’. This goes not only for Crohn’s, but for all kinds of family issues.)
What has been the hardest thing about me having this disease?
It has been really hard to watch you feel pain and know there isn’t anything I can do, and accepting that it won’t get better. Also, watching you miss out on things you wanted to do, like work and more active things with me and my sister. Watching the medication you have to take to help with Crohn’s affect you badly all the time, and treatments you have to endure.
(My comment: I think sometimes I’ve been less sensitive to this than I should have been. I remember one time I was hospitalized overnight — I’d had a bad reaction to some medication that the doctors thought briefly was a stroke — and I came home the next day. I was so worried about my daughter’s experience with this that I sent her to the school counselor for a session to make sure it hadn’t adversely affected her. But other than that, yes, I think sometimes I’m so caught up in the illness that I’ve forgotten to take a look at how it affected my kids, or maybe I believed that it didn’t.)
Have you ever been afraid you would get it?
I have been concerned it was possible to get it, especially when I have gone through stomach pains, but not really afraid. I honestly feel more afraid of the guilt I know you would feel for me getting it than actually having it myself.
(My comment: I’ve worried so much about my kids getting the disease. I’ve had different doctors give me different statistics about the offspring of Crohn’s patients having it. One doctor told me my kids were 10 times more likely than the average kid to get. My current doctor said it’s about 7-10 percent chance, which reassures me a lot.)
Is there anything you wished I’d done differently to deal with this illness as you were growing up?
I wish you would have been a bit more open and honest about how it was affecting you and how we could help you. Sometimes it felt like we couldn’t discuss it because you didn’t want to hurt us. I feel like there is a lot about the disease I don’t know.
(My comment: I feel like I’ve been pretty open and honest, but maybe I need to be even more so!)
Is there anything else you want to add?
Sometimes I don’t know the difference between normal tiredness and other issues versus the disease for you (though I’m sure you often don’t know the difference), and I wish I did.
(My comment: I definitely know the difference. I’ve tried to express to everyone around me that Crohn’s is a specific feeling, especially in my case. I guess I need to work harder on that!)
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