Compassion Fatigue vs. Unconditional Friendship

This is a repost of an earlier entry.  Feeling abandoned by friends is a feeling that ebbs and flows.  I am NOT in this place right now in any way.  Nothing has changed with the old friends, but I have cultivated a new, more stable support system.  I’m posting this again, for those of you that are struggling with this right now.

Please join in a conversation via the comments and share liberally.  These conversations are just as important for Lyme Disease Awareness as details about how to remove a tick.

This is more of an inquiry than a post. And trust me, if you are reading this post, it is unlikely that I am talking about you. Really. Unfortunately, this inquiry will NOT be viewed by the people I most want to see it. I want to speak to the people who have dumped me, cut me off, let me go, but they aren’t here reading my blog. They aren’t the ones who will be willing to answer, because they have vanished.

I had a dear friend tell me that she had taken a break from me after my diagnosis because I was “all-Lyme, all the time”. It made me realize how easy it is for me to drive people away without intending to. But, at the same time, I struggle with the meaning of friendship. It makes me wonder why we, in this culture, think it is necessary to take breaks from friends when they most need us. I can’t take a vacation from Lyme Disease, even though you can take a vacation from me. I can’t pretend that my kids aren’t sick. I have to live out loud. If that is uncomfortable for you, I really do want to know why. I have no intention of changing it, but I do want to know.

Struggling with a life threatening illness, one that you now share with your husband and your children is not easy. There is no cure. There is no protocol. In order to make progress, we need to be continuously aware of our diets, our environment, our treatments, our exercise, our stress levels. That would consume the healthiest of people. Yes, 17 months down the line, I have a better container around our illnesses, but frankly, it is still Lyme, most the time.

I want to be brave. I want to yell to those friends who have left me: “TELL ME WHY YOU HAVEN’T EMAILED ME IN 11 MONTHS?” or any number of questions.

I want to know what the challenges are to reaching out to a sick friend. Theorizing alone is no fun, so I’d like to invite my readers to weigh in on this.

Why do friends let people with chronic illnesses suffer alone?

If you sigh every time one of your friends emails you about their illness, posts something on Facebook about their illness or invites you to events surrounding their illness, why? What is underneath that sigh? Is it regret? Is it fear? Do you roll your eyes, wishing they could just go on with their lives? Do you want them to “cut the drama” and go have a beer? There will be no judgment for your honest answers. Just share them. Use an alias. I’ll take my restrictions off for comments so they can be private for this post! Share for me. Share for my readers, many who struggle with invisible illnesses as well.

How can we, as “friends” offer help to someone who is consumed by their illness when what we really want to do is just click “delete” or “hide” when we see their name in our inbox or on our newsfeed?  I can assure you, they are more overwhelmed by their illness than you are.

Is running away, cutting them off, making excuses the best way? For you? For them?

And to those of you who have the strength, the courage and the willingness to stand by the side of your friends with chronic illness, why do you do it? What draws you to support when others are repelled?

What sustains me in this illness is my Faith in people (which is sometimes flimsy, at best), Trust in friendship, and having companions on this Journey. I have no understanding around conditional friendship. Maybe you can teach me.

As my mother used to say, “If you can’t stand the heat, get out of the kitchen.” To all the beautiful friends of people with chronic illness who refuse to leave the kitchen, many thanks.


13 responses to “Compassion Fatigue vs. Unconditional Friendship

  1. I’d like to know the answer to that question also. I have one good friend left and we are comrades in sickness as she is fighting breast cancer. I guess maybe the others weren’t really friends. When the going gets tough the friends get going? Out of sight out of mind?
    When I was really sick and scared before I knew about Lyme disease I had a friend tell me I just wasn’t trying hard enough. As in I wasn’t being positive enough to change what was happening to my body. That was the last time I spoke to her other than sending an email saying “How dare you” after I calmed down and thought about it.
    Thank goodness for the internet. I can’t imagine how isolated and lonely I would be without it.

  2. i guess for me it really does come down to “all lyme, all the time.” i do feel bad for you but friendship is a two-way street. when was the last time you asked about me? while i don’t have a chronic disease, neither are things hunky dory. i have been unemployed for a long time and am barely scraping by, and i feel sad and violated when you ask me for help or money. i feel used and maybe i am not the only one who feels that way.

    it is not all about you. it’s about other people too.

    • Sara, I appreciate your comment. I’m sorry if you feel overlooked. I do help friends and check in with people as often as I am able. I didn’t realize that I had overlooked someone. If you want to tell me who you are, I’d love to be there as much as I can. I often make offers via facebook for extra food and produce because my husband tries to volunteer for Sister’s Camelot and I try to share the abundance. If that would be helpful, please let me know. I’m so sorry if I haven’t been pulling my weigh in our friendship and that you feel used. Never, in my 46 years on the planet have I wanted to ignore the needs of others, even when mine are high. I’m so sorry.

  3. When I got on FB, all of a sudden I was in touch with all the people from my “before” life — before I became chronically ill at 25. So, everyone from high school, and esp. college, including my ex. And she said she couldn’t read my posts that were all about Lyme and my other illnesses because “it wasn’t good for her.” I have heard this from a lot of people — that they need to be around “positive energy.” It seems to be a new age way of saying, “You being sick is a bummer. You’re killing my buzz.”
    Even friends who are sick dumped me over my being sickER or my talking about being “sick” as opposed to saying I was “recovering my health.” I had a friend say she couldn’t tolerate hearing about the way I coped, because she had to believe she would get better, and I was focused on my current quality of life.
    So, I think it’s mostly fear? And a belief system that supports that fear — that the disease itself may not be contagious, as friends, but that the grim reality might be?

  4. Goodness, it hurts me to ever see that people would actually think about whose suffering is worse on this planet… Or think about alienating friends because they squash their good vibrations. I am chronically ill as well. I know that just like Sharon described in her post, I have had experiences with some people on FB who have said in so many words, “You being sick is a bummer. You are killing my buzz.” If they don’t say it, I can sure feel it. Talk about killing an energy field! Think about what that does to mine. But how do you solve a problem like this? Should we throw people out of our energy fields who are disturbing to us? Is this the New Enlightenment? The Age of Separateness? I thought it was the Age of Oneness. How confusing. Oh, how self centered we are becoming as human beings. My way is better than your way, and war until the end.
    Are you sure you have such a good energy field without the presence of someone who challenges you to grow as a human being? What I know, is that people who build walls around themselves do so because of their own fear of changing. I am going to make a statement that is hard for some folks to hear (because they don’t always think of themselves this way), but “ignorance doesn’t make you immune.” Responses that are not made from the heart are made from the ego.
    Because I know Jeanne very well- a friendship that began IRL, and has grown over the years as we now keep in touch online, I know her heart very well. Jeanne is interested in everyone’s welfare, and has always made sincere and heartful exchanges of “love to you for love to me” (and sometimes this love is just an exchange of a smile or a hug or supportive and encouraging words- and only that—-because Jeanne is *pure* goodness)– I have never known her to be different. Never. She works tirelessly to help anyone and everyone. ALL of her friends. Jeanne has the same goal that we ALL do (or all should have): Peace.
    Peace is the goal. Togetherness. Not alienation. Think harder and decide if the way you have approached this is the way toward peace.

  5. Hi, I am a little late, finding this blog post in late June from googling “compassion fatigue.” You and all people struggling with a chronic illness or condition certainly have my sympathy. I have a couple myself, although none life-threatening at the moment, so that’s very different. I do, however, have two good friends who have been living (with difficulty) with stage IV cancers for over three years; and I lost a very good friend to cancer three years ago. In our 50s — earlier than I’d imagined. I also lost a friend to suicide four years ago. My father, whom I love dearly, has been ill and in a nursing home nearby for several years, and I and my husband are mainly responsible for him; we are his only family in our state. I treasure this time with my dad and am more than happy to have this chance to support him in a variety of ways — to give back — but it is also extremely stressful and entails a lot of grief and energy that is impossible to describe.

    I stayed (and stay) involved with all these people I love.

    But I’m writing today to express the point of view of some friends who may have disappointed you and some of your commenters. I’ve been a very compassionate and empathetic person all my life — those values are crucial to my life — and I now find myself in therapy trying to deal with chronic anxiety and exhaustion from being “there” for people for so long. It never occurred to me I was overdoing it, and suddenly, a couple of years ago, I began to feel emotionally malnourished, adrift, lacking in social energy, and wanting to spend almost every day in solitude with my music and art. Suddenly I feel I have no more to say, no more to give. I am emotionally exhausted.

    This is not to say I haven’t received great friendship and support from others. I have, and I’m very grateful. It’s just that my “always being there” and involved has nevertheless exhausted me. I feel empty and depleted. And during the past couple of years two long-term and important friends have “dumped” me because they felt I wasn’t offering the same level of compassion and deep listening as I always had before. So you see, I feel abandoned by friends too, and unfairly, given our history. My exhaustion didn’t matter; my own needs didn’t matter.

    I think we all need to understand that everyone’s life is complicated, we all have human frailties, we can’t always give at the exact same level for years on end, even people who aren’t seriously ill have huge stresses in their lives, and we all — chronically ill or not — are treated unfairly at times and even abandoned by people we thought were dear friends because of what they saw as a (momentary) lapse in attention.

    The people you wrote about may well be selfish, frightened people who are deep disappointments and maybe would have been no matter how life went for you. I just hope you will remember that not all people who can’t be there enough at any given time are selfish or frightened. Some people just get seriously emotionally fatigued and need to replenish, and don’t deserve to be dumped for that human need.

    Thanks for listening, and for your thought-provoking post, and I wish you health and happiness.

  6. I have experienced only a part of what you all mention. This happened when I moved abroad. After that I found out I had lymes. I have told only my family, 1 friend back home, and a few in the country where I live. I lost many friends by moving and I dont want to lose any by disease.
    Does anyone have tips on how to balance the whole friend thing? I mean how can you be honest about your health and still be friends? I always feel lousy so I almost want to tell them, “Yes, I am not feeling good and I probably will feel this way for awhile. I will let you know when I really feel bad.” I dont want to talk about my health all the time because frankly its rarely good. Advice would be great^^

  7. I was also googling Compassion Fatigue when I found this, and I am at a complete low right now. Thank you all for making me feel less alone.
    In the past two years, my life turned upside down. My husband decided he wanted out of our marriage after meeting someone else. I changed careers from software implementation specialist at excellent pay, to one that I love – animal rescue and advocacy – that pays next to nothing. With divorce court pending this week, I’ve been “dumped” by a few lifelong friends that I stood by no matter what.

    So now I have new friends and new goals to look to. People say oh, you will get back together again with them but I don’t think so anymore. I loved so much and gave too much, and it’s time to move on I guess. Reason, season, lifetime… I expected more from my friends than I ever did my husband, so I’m so much more disappointed. In time, I hope to gold the old memories close and make new ones with all my new friends.

    Good luck to all of you. Yes, you have to be a friend to have a friend but when you start saying no after years of saying yes, don’t expect them to be happy about it…

    Like Anonymous, I was always there for everyone – emotionally, financially, no matter what it was, I wanted to help. Once the husband bailed, I plummeted downward. I needed help for a change. Addiitionally, everything within me was given to the animals. I found more and more distance between my old friends and I. I was hurt in an accident and now have a great deal of pain in walking. I can no longer do the things I used to do with these friends. I can hear the sighs in the phone. I get turned down when I try and make plans, or just get left out. This weekend was an annual event for us all to gather for my birthday and I’ve been “uninvited” because I’m such a downer, a bitter old woman. I don’t think I am bitter. I’m still fighting out the divorce for what’s mine. I’m in an intensely emotional job that many can’t handle. I live with alot of pain that I try and hide but just can’t do things anymore.

  8. I had to let a 20+ year friendship go. Her child has been chronically ill over that period of time. I didn’t realize it could have been due to compassion fatigue. I am in the health care field.

  9. At the age of 35 I developed a progressive, degenerative neuromuscular disease. I lost my independence, my ability to work, and had to move 3000 miles away from where I had made my life to live with my mother. I have lost a number of friends – some whom I thought I’d have in my life forever. I was stunned when a friend of 20 years stopped talking to me when I got sick. After three years of begging her to explain I finally got her to talk and basically it was all a bunch of bullshit. She told me my being disabled and isolated was going to make me too needy for her to deal with – that she wasn’t going to be able to give me what I needed from her – she couldn’t be THAT friend she said. I was floored. This is a woman I emotionally supported through friendship for decades – her depression, her constant desire to be in a relationship and never finding the right man, etc. I was totally pissed off. She was so presumptuous and self-absorbed! She HAD NO FREAKING CLUE WHAT I WANTED OR NEEDED FROM HER SHE JUST DUMPED ME SO SHE WOULDN’T HAVE TO DEAL WITH IT. All I wanted was her continued friendship and support – but my being sick just got in the way of her hypochondria and finally being in a relationship she was happy in, etc. God forbid I get to enjoy some of her happiness. Her dumping me left me MORE ISOLATED AND MORE ALONE. I have so much anger and sadness over what she did to me. I have to make peace, for my own mental health and well being. I have destroyed almost every photo of our history together and if I could I would erase my memory so I didn’t have to think about her ever. If I saw her in person I would probably physically assault her – punching her in the face would bring me great satisfaction at this point. It is unbelievable how people assume they know what you want or need when they have absolutely no idea what it is like to be sidelined in life by a serious illness that will just get worse as time goes on. I am still a person and still have interests outside my illness and still need friendship and love and companionship just like I did when I was healthy. I hope that one day she is in need of support – either due to illness or something else and someone she loves deeply and relies on abandons her. It couldn’t happen to a more deserving person. The friends in my life who have remained and continue to share their lives with me – and that’s what we do – we SHARE our lives – those people are like gold to me. The selfish, shallow, superficial friends who can’t be bothered for whatever lame reason they have rationalized their shitty behavior don’t deserve to share their lives with me.

  10. I’ve appreciated what you’ve written Christina. I’d have to say that I am friends again, I missed her voice. I simply called her up and we continued on without missing a beat. Nothing has changed with her daughter’s illness, and I imagine I will be there till the end, hers or mine.
    Our rift was the cause of her listening to the words of a mutual jealous friend, and her momentarily believing the cruel message. The friend later recanted, but it was not before she lambasted me with our history of over 20+ years and how she had to listen to me go on and on with my life’s events. I was floored, and I guess time eased the shock and pain.
    I don’t know, it’s not easy forming trusting, lasting friendships, and I had to weigh that against never having her in my life.
    I guess during that span of time that I was not communicating with her, I then began to see that our conversations were always focused on her childs progression in the illness. Well, nothing has changed.

  11. My friendships have changed a lot in the short space of time I’ve been sick (8 months so far).

    Some people feel they no longer have things in common with me (my old drinking buddies for example, as I can no longer go out with them).
    Some don’t know what to say and are afraid of saying the wrong thing, so they say nothing.
    Some feel that ‘there must be someone who’s closer to you that you can lean on’, but of course if everyone thinks that, there’s no one there for me to lean on.
    Some just get bored of hearing the same old stuff.

    I’ve become very aware I need to have things to talk about with people other than my health. It’s so hard though, due to my health I don’t go out and actually *do* anything. I’m limited to stuff I see on TV, news, etc. I try to ask what’s going on in their lives. I’ve also tried to just make new friends who have chronic illnessnes themselves.

  12. I am the daughter of a woman who’s had rheumatoid arthritis since before I was born, and I’m now 49. In addition my brother has had chronic renal failure since he was almost 18. I was 21 and I can still remember Mum on the phone to the ultrasound unit shrieking “What do mean – he’s ‘got no kidneys’!?!!!”

    Being emotionally attached to people who are ill means journeying with them through places that really aren’t that pretty, and knowing that there are going to be yet more of those places over the years getting progressively worse until they die. It takes a certain fatalism to be able to do this. Sick people do have a tendency over time to become quite engrossed in their symptoms procedures and their significance, and if there’s no area of their lives which speaks or relates back to their previous existence – their ‘non-sick’ persona or interests – I can see that certain friends may not wish to hang around. Illness is a frightening thing for everyone, because we’re all human, and it could have been us. It confronts us with our mortality. We like to think, in this modern era, that we control most if not all of the significant things that happen to us, and illness reminds us palpably that we don’t; that we are not in control. How well an individual deals with feelings like these will have a lot to do with how well they deal with illness over time.

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