How family members cope with a chronic illness

General
1

I remember it well, when I was first diagnosed with SLE. I was at the Dermatologist's office, being assessed for this weird thing going on with my skin, which was misdiagnosed as things other than Lupus for a number of months. One of the misdiagnoses lead to me spending some time in a UV light box as treatment. I lit up like a Christmas tree! I had been going through a lot of stress at work and having two other autoimmune conditions (Type 1 Diabetes and Alopecia Areata (now Universalis)), I thought about SLE. Then, I overheard the two doctors talking and I heard "SLE?". I said to my husband, "I have Lupus! - I knew it!" My husband has been in denial since day one. He has always told me that he believes I was misdiagnosed again. However, a skin biopsy, along with symptoms confirmed the Lupus diagnosis. I have been trying to explain to him that I think I am dealing with "Lupus fog" now. Again, he just can't accept that things that are happening to me may be disease process related. I believe that it is because he loves me and doesn't want to see me be sick or in pain, but it is so frustrating, because it seems like he doesn't believe what I am saying. I don't know that he would utilize a support group for family members, but he might. How do your family members cope and have acceptance? I really don't want to tell my family, because I don't want them to feel responsible, but their lack of acceptance has contributed to my depression related to my illnesses. I don't want to blame them, I just want to help them understand and to be realistic about what our children may be facing as they get older. I know that Lupus itself may not always be inherited, but they are more likely to have some type of autoimmune disorder, based on my issues. How do you help your family to cope? Are there options for family support groups?

2

I printed out several items on Lupus for my husband to read...although I don't know that he did. The very best thing that I did was take him to the doctor's office with me and have her explain the signs and symptoms. Coming from a professional helped him to understand that I was not making things up, although we had gone through years of "weird" illnesses with no known cause. Pneumonia, migraines, extreme fatigue (which initially he thought was me being lazy), forgetfulness, etc. Now it makes sense although at the time it was just annoying.

Take him with you to your Rhuemy if he is willing to go. But make sure your doc understands Lupus otherwise it may make matters worse.

Hope this helps.

3

My husband doesn't really bring the topic up. He did a lot of his own research and I told him he can read the book I read when I was first diagnosed about SLE. Men compartmentalize. Their wife/SO being sick is not a compartment they want to go into, and honestly, I can't blame them. Unless something really bizarre or new is going on with me, I don't bring it up because I don't want him to worry. I would love for my husband to go with me to the rheumy so he can ask his own questions and learn a little more, but his schedule just hasn't permitted it recently.