Losing friends due to chronic illness

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

 English proverb

I’ve written about my experiences with lupus and chronic illness before from so many standpoints, but I believe this has been the toughest topic to address.  So many of those folks that I have called friends in the past are no longer a part of my life. They, like many of the reader's friends, seemed unwilling or unable to comprehend my disease or my journey with chronic illness, 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 five 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, actually called me to say that she had done a lot of research on lupus, and wanted to know how she could help me.  Her gesture told me volumes about the sincerity of our friendship.  Another friend questions me, genuinely, each time she sees me….which is several times a week….”How are you doing, REALLY?”  I also deeply appreciate the friend a few weeks ago who gave one look at me, put her arms around me and whispered, “I can tell you are having a rough day.  What can I do to help?” To be honest, though, I don’t expect everyone to be that insightful.

 

If you’d like to read more about my journey with chronic illness, you can find that here:

http://hubpages.com/health/Facing-The-Giant-My-Lupus-Diagnosis
 

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?

Chronic illness scares some people, or they don’t know what to do with me or how to treat me. I am learning that this is just what happens in chronic illness life.

Don’t get me wrong, it is frustrating and it does hurt, but I have realized that my illness pushes people to their poles. Those who are not interested or can’t cope (regardless of the reasoning) create a distance between us that was not there before, and those who are able to take my illness in their stride create a closer bond. People have clearly become more safe than they ever were,.…or less safe, and it is being defined by their responses to my illness.

The irony is that I don’t want to be defined by lupus, or the host of other diagnoses that I manage each day.   I am not embarrassed and truly, anyone of you can ask me anything. But that is not the same as me wanting to talk about it all the time, and the last thing that I want is for it to be the main thing that we talk about.

 I would love my friends to be safe enough for me to cry on their shoulder when I need to or for me to tell them of a frustration or whatever, but for the most part I just want to be me as I am…..the crazy designer artist, who is still dreaming of that great exhibit, still working to put together that solo show, the eccentric herbalist who is constantly experimenting with different blends of essential oils to heal my body, the home-schooling mom, martial artist, and friend who I hope my friends can call on in time of need.

My public world has expanded as I have taken on a role of creating awareness and understanding, but my personal world has shrunk to about a quarter of what it was! I am pleasantly unsurprised by some of whom fit into that safe category, and pleasantly surprised by others who have chosen to move closer rather than run away from me or attack me. But all three quarters of those who are running away have surprised me.

It was a painful process of losing people. It still is.  Some of those friends have willingly walked away, and some I have purposely ended relationships with. Part of this is a result of the people in my life not being the greatest people to have as friends, and part of this is a direct result of me making positive changes: getting sick allowed me to see my world with a new perspective. My life is no longer about petty concerns and trivial bullshit. (Yes, I used that word.  I know that shocked some of you.)  Now, it’s about creating a calm, positive, healthy environment and keeping my stress to a minimum. It’s about creating as happy a lifestyle I can, living the inspired life,   for myself, and my family and friends that remain....... in spite of immense suffering.

And that means being proactive about who I surround myself with.