My DH has been suffering from Crohns since he was 10. He was misdiagnosed for a year and treated for a kidney disorder. After almost dying of malnutrition (all his hair fell out - hospitalized for 6 weeks) he was correctly treated. The malnutrition also caused his growth to be affected so he also gets to deal with all the garbage thrown at short men. He was on 75 mg of Prednisone for years. Had a bowel resection in his early twenties and was symptom-free for a year before the disease came back. Now he's on a non-steroidal anti-inflammatory med and hasn't had a flare-up in years. He never complains though I know he is often in pain.
What's it like for the SO? As much as I would like to say that I am always supportive and understanding, I can't. There have been times when we've had to cut an evening short or refuse an invitation because of his illness. Family outings sometimes become a challenge. Difficult to accept invites to cottages because of privacy issues. Most of the time I've been okay with it, but sometimes, I'm ashamed to admit, I've found it very frustrating. I'm still working on it.
It's impossible to describe the effect a chronic disease has on family. When DH was a child, his parents let him get so sick that his younger siblings were afraid that they were going to let him die. His sister told me she was afraid to get sick as a result. I find it difficult to hide my anger when his folks start talking about how hard his illness was on THEM. My MIL is also not afraid to play the guilt card when she wants to manipulate DH. All of this has far-reaching effects on the family dynamic.
The saving grace is DH's attitude. By-and-large, the instances when we have to rearrange our plans do not occur all that often. He wants to live as normal a life as possible and makes every effort to do so. He has developed an extremely high tolerance for pain and goes to work when other people would be on their backs.
One family member's disease affects to whole family. At DH's urging, we all just try to be honest and communicate about it. That helps all of us.
What's it like for the SO? As much as I would like to say that I am always supportive and understanding, I can't. There have been times when we've had to cut an evening short or refuse an invitation because of his illness. Family outings sometimes become a challenge. Difficult to accept invites to cottages because of privacy issues. Most of the time I've been okay with it, but sometimes, I'm ashamed to admit, I've found it very frustrating. I'm still working on it.
It's impossible to describe the effect a chronic disease has on family. When DH was a child, his parents let him get so sick that his younger siblings were afraid that they were going to let him die. His sister told me she was afraid to get sick as a result. I find it difficult to hide my anger when his folks start talking about how hard his illness was on THEM. My MIL is also not afraid to play the guilt card when she wants to manipulate DH. All of this has far-reaching effects on the family dynamic.
The saving grace is DH's attitude. By-and-large, the instances when we have to rearrange our plans do not occur all that often. He wants to live as normal a life as possible and makes every effort to do so. He has developed an extremely high tolerance for pain and goes to work when other people would be on their backs.
One family member's disease affects to whole family. At DH's urging, we all just try to be honest and communicate about it. That helps all of us.
