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Back in July 2010, I wrote a post entitled, "Have you lost friends when you acquired a chronic illness?" Even though I put up this post almost three years ago, it's still being read and commented upon. I think readers find this topic of interest because it seems that each of us experiences a change in the dynamics of our friendships once autoimmune disease enters the picture.
Here's my favorite paragraph from that post; a quote by Susan Milstrey Wells:
"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."What good advice.
Readers have left several very good comments on this post, and most seem to agree that those friends that stick with us through the difficult time of adaptation to chronic illness are precious and few. We miss those people who had previously been important in our lives when they dropped off of our radar due to the changes that accompany our disease. It hurts. Many feel as though the only way to maintain friendships with some people is to pretend that they didn't become ill; to ignore the elephant in the room with the word "Sjogren's Syndrome" painted on his back. Nothing to see here, folks......just move along....
A few months ago, this comment brought a slightly different perspective to the discussion:
"Have you ever thought about it from your friends' point of view? If you are often talking about your illness over and over, your friend may lose interest in hanging out with you. I have a friend who has a chronic illness who talked about her illness every time I came to visit even if I did not ask. I have my own health issues and don't sit and dwell on them. A balance is needed. Support and compassion--check. Codependency and pity for the martyr--NOPE!"My first reaction after reading this was to bristle defensively just a bit. Me? Martyr? Dwelling on my health issues? Never.
Um. Well.....
After some thought, I realized a bit reluctantly that even though the writer was a bit harsh, there was an element of truth there: that friendship is definitely a two-way interaction, and if one of the two parties is hogging the lion's share (Mixed metaphors. Sorry.) of the attention and discussion, the relationship would definitely suffer.
There's no doubt that every one of my friends and family knew ALL ABOUT the latest hitch in my giddy-up. I talked about white blood cells and neutrophils and CBCs and isolation ad nauseum. To anyone who would listen, and even to those who tried not to.
Thank you, dear ones, who just smiled and nodded even though you had heard the litany of my trip to the ER at least a dozen times already. And then you tolerated all of my wah-wah-wah-ing about being bored and housebound and tired and....yadayadayada. You brought me goodies and books and called and emailed. You were far nicer to me than I really deserved. This is why I love you all...
So this comment is a good reminder of what Susan Milstry Wells means when she says that we need "to strike a delicate balance between our own needs and the demands of our most important relationships..."
It's that balance. It's all about balance, isn't it?
So hard to do.
What was your reaction to this comment?
13 comments:
whole heartedly agree!
as part of my job I do home visits with pregnant women and new moms and their babies. What I have come to realize is EVERY life has challenges- be they health related, economic, social,etc. We cannot let them define us; help us to grow in empathy perhaps but not become the central point of our lives. A person of singular focus is very dull, people who converse on a variety of topics, ask question about YOU and show interest in world events and the needs of others are people others want to have in their lives. Sjogrens is part of who I am but I am so much more!
I agree. A lot of my friends don't even know the extent of what goes on in my life. The close ones do (of course), and THOSE are the friends who always ask, "How are you feeling?" , "Anything new at the doctor office?". Really I think my husband shoulders the majority of my griping (poor guy). Just last night I was feeling very rough. He came home and took one look at me and said, "Rough day, huh? How are you?" My reply was, "I'm fine". He told me I wasn't a very convincing liar :)
I guess I hate to hear people complain about their ailments. I have a friend who has back problems, which I can understand and have been there myself...however, I don't enjoy hearing him talking about nothing but that.
I come to this blog because I WANT to hear how other people deal with this. I WANT to hear the griping, so I can commiserate. Sort of my own private therapy session. Thanks!
The timing of this couldn't be more perfect for me just now. I had a CT of my head and neck done just recently. When I was telling my parents, my Dad responded not by asking the results, but to change the subject by telling me about a grandson having an ear infection. Of course, I was upset, and shut up. Then while telling my husband, he started reading the mail. It hit me that I have completely worn these poor people out, because Sjs is controlling my life. I made a decision not to discuss my daily maladies. I will keep them to myself because Sjs is not worth taking up that much of my time. I certainly do, however, love to read and commiserate with this blog and other Sjoggies, because I relate to you and I know you understand. Thank you for this blog - it really preserves my sanity!
This is also very important advice when dealing with your signifigant other as well. I know I have worn my poor hubby out by complaining about every little ache and pain, new symptom, strange occurrence, etc. He always smiles and acts interested, bless him, but I can tell that he would rather be doing something else. He's the most compassionate, supportive spouse I could ever imagine, but I am learning to not even tell him the little stuff and talk about something else.
I guess this is why support groups were invented!
I had to tell one of my very best friends of several years that I was giving her up like an old sweater. She was going to be sent to Goodwill.
She actually said that I wasn't really sick, I just wanted the drugs. She went on to say that she hoped I died.
My life runs so much smoother without her and her problems on top of mine.
I have been making new friends. Friends that are meeting me as I am now.
Friends that aren't afraid to park in the handicapped parking space instead of two miles away from the door because they think I just need exercise.
Friends that don't roll their eyes when I tell them that I am tired and have to go home.
Friends that don't take it personally because you don't show up to their parties and outdoor BBQs.
Friends that don't understand why you aren't being more sympathetic to their complaints about menstrual cramps, fights with the health industry or what somebody said about them.
Until I cut her lose, I didn't know that there were people that understood how I felt or if I was comfortable or if there was something that they could do for me.
It took my family forever to understand that the woman who made their rocking world go round, a rock herself, could be brought so low by a disease that I carried that made me still appear so normal.
This was even harder for my so called friends.
I don't worry about friends anymore. I have more fun feeding my squirrels and blue jays. I found Julia by chance. I found this Sjogrens community. The relationships I have with my family has grown closer.
I have a better quality of life now that I know what I need. I wouldn't have had that if I hadn't contracted this disease.
There is a season for everything under heaven. I'm glad that the season of my supporting others is over. It is now the season for taking care of Shara under new rules and conditions. If there are more friendships out there. I'll find them.
This has made me start to reflect on things. Most of my 'friends' disappeared over the horizon when I started to care for my parents - eyes front when driving past the house, they don't see you so they don't know that you are struggling. SJs came along some time later so most of them had gone - just a couple of fantastic people left, quite frankly the rest can get stuffed! I just hope they don't need help one day.
I have very few symptoms for SJs - dental probs, dry eyes, skin problems, blocked saaliva ducts, odd unexplainable things which go as suddenly as they arived, a bit tired but that may well be as a carer for a person with dementia. I find listening to people's health problems interesting, if I had known about SJs I wouldn't have gone through all the suspicion of hypochondria that I got from doctors. i listen to what happens to people, how they are treated and with what, all stored away in case needed in the future.
i value this blog beyond words, it is charting a journey, I sincerely hope my journey is easier, in case it isn't i want to know what to expect.
What I have found is that I have changed, I realise how trivil and empty many people are, with such shallow values.In many ways I am grateful to SJs for that, people don't take a blind bit of notice that i tell them I have a chronic illness which has to be monitored. That goes for medical care as well,the hospital often cancels my appointments, I had to cancel because of illness, I am now denied access to the rheumy, no monitoring/treatment/blood tests, nothing. Unless my GP surgery can get me back on the list, my journey is one my own, all I have is the eye specialist and I notice that I haven't been given an appointment for that so might be off that list as well.
I am really happy I found this blog, I've learned a lot, and am so glad to see that I'm not alone in many of these experiences.
I really try not to bore people with an endless litany of health related conversation, although I do find health issues fascinating and listen willingly to their stories too! (I swear!)
I really love cargillwitch's comment: "A person of singular focus is very dull, people who converse on a variety of topics, ask question about YOU and show interest in world events and the needs of others are people others want to have in their lives."
Just because I have physical limits and memory issues and trouble making myself understood sometimes doesn't mean that I should close myself to new things... and to learn new things I have to listen to someone else talk once in awhile. ;) So I try not to let depression over my limitations, aches, and pains make me self absorbed. Self-absorbed people are the only ones that are truly boring.
I LOVE this post mostly because it is honest and I can relate to it. You are right, we have to take some type of responsibility for how much we talk about our illness with our friends and loved ones.
I struggle with the friendship issue on a regular basis for many reasons. But the bottom line is, I have found out who I can really count on.
I want to comment on what mcspires said about her father changing the subject when she talked about her illness. My parents were getting on in years when I was diagnosed with MS, and that kind of thing happened to me all the time with both parents. I finally realized they were in denial because they felt helpless. They were facing the end of their lives and just couldn't deal with their children's problems too, which just added to their distress. My own adult daughter has lupus, and now I "get it." I know there isn't much I can do to help her except listen, but listening is stressful and I need to guard my own health. Like most things in life, it's a balancing act and difficult to get it right.
I loved reading all these comments. I am happier knowing I am not alone. And special thanks for Betsi's insight!
O.M.G...your post was a revelation ...it is a TWO way street...thank you!
Hey, Anonymous? Was that sarcasm? 'Cuz I feel like it was sarcasm....but I'm not sure.....derp derp derp...
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