Have you lost friends when you acquired a chronic illness?

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I received an interesting question the other day from a reader who asked why some of her friends after learning of her Sjogren's syndrome diagnosis just don't GET IT. She shared that she had an incredibly supportive husband, but:

Most of my friends, though, don't remember that I have a "thing", which is fine except when I can't participate in something because of the way I'm feeling or maybe I can do something for a short time. They don't remember my "thing" and keep asking me to do the particular activity. For some reason I hate saying "I have an autoimmune disease" or "I have Sjogren's syndrome"...... And because my friends don't remember what I've told them before, they make me go over the whole thing again, with a puzzled look on their faces as I explain, etc., as if they don't see the problem. And then there are always those friends who quiz you on your lack of participation in an event, and then when you finally start to answer them, their eyes glaze over.....

Anyway, most of the blogs I read are from people, like you, who talk about the wonderful, supportive friends they have. Maybe I need new friends! :-)

First, I want to apologize if I have given the impression that all of those folks that I have called friends in the past are still part of my life now, because to be honest, many of them aren't. They, like many of the reader's friends, seemed unwilling or unable to comprehend my disease and when I stopped participating in activities that we shared, they slowly just dropped out of my life. When I happen to meet one of them somewhere, they will inevitably ask politely, "How are you?" and fully expect me to simply smile and reply that I'm fine. Which is what I do and then we both move on. 

I have felt your frustration and disappointment, really I have. It hurts when people that say they care about you don't seem to want to take any initiative or make an effort in understanding the enormous changes that your body is going through, doesn't it? 

What I once thought was a very large circle of friends has become much smaller over the past seven years. But those that remain are those that keep me going. Here's a great example: One of my friends, after hearing of my diagnosis, went out and purchased a book about Sjogren's Syndrome. She gave it to me only after reading it all herself. Her gesture told me volumes about the sincerity of our friendship. 

So yes, I do have a few wonderful friends and they are more precious to me now than ever. But their number is far fewer than I would ever have imagined ten years ago. It helps me a little to know that this, to some extent, can be chalked up to human nature. Others have described this less than ideal human tendency much better than I ever could: 

John Churchton Collins said, ~ In prosperity, our friends know us; in adversity, we know our friends ~

And: 

~ In time of prosperity friends will be plenty; In time of adversity not one in twenty ~

English proverb

So the questions remain - How can you tell which friends will eventually GET IT and which won't? How many times do I have to explain it all? And what do I have to do to maintain my friendships? Why did some friendships become so hard, and why do some seem unchanged by my disease?

I wish I had the answers to these very difficult questions.

In her book, A Delicate Balance: Living Successfully With Chronic Illness, (Perseus Publishing, 2000, pg. 191) author Susan Milstrey Wells delves headlong into these same issues. She discusses the many ways that chronic illness may impact all of our relationships - those as a spouse, a child, a sibling, a parent, a co-worker, and as a friend. She sums up her chapter regarding relationships by saying:

"Chronic illness throws a monkey wrench into our relationships. We may seem as foreign to the people who love us as if we had begun speaking a different language. Our family and friends still want us to the mom who works, the dad who plays baseball in the backyard, and the friend who meets them for lunch. In turn, we want to be treated as the same loving spouse, parent, and friend we always have been. A large part of the responsibility for making those relationships work falls to us. We have to educate our family and friends about our disease, allow them to express their emotions openly, and clearly state our limits and our needs. Also, we have to expect these changes to be unsettling.

Ultimately, as we strike a delicate balance between our own needs and the demands of our most important relationships, we grow in self-awareness, creativity, and acceptance. We can't be sick successfully without learning to love ourselves, and when we accept our own limitations, we're much more likely to let those around us be less than perfect too."

Well said.

How about you? Have your friendships and other relationships suffered when autoimmune disease entered your personal life?