When Friends Disappear During a Health Crisis

[charityfundraiser]

Coping With Crises Close to Someone Elses Heart
http://www.nytimes.com/2010/08/17/health/views/17essa.html

When Friends Disappear During a Health Crisis
http://well.blogs.nytimes.com/2010/08/16/when-friends-disappear-during-a-health-crisis/

 

[Sasha]

Coping With Crises Close to Someone Else’s Heart
http://www.nytimes.com/2010/08/17/health/views/17essa.html

When Friends Disappear During a Health Crisis
http://well.blogs.nytimes.com/2010/08/16/when-friends-disappear-during-a-health-crisis/

Fascinating article, and so are the comments - I'm impressed by how some of those who have been avoided by friends while in crisis can go beyond just disapproval and towards understanding and compassion for distress in the face of others' distress.

I had the experience of someone who I thought was my closest friend barely contacting me during my first, years-long, serious bout of ME and then expecting to just pick up where we left off when I went into partial remission, with no awareness that I would think that strange or that her behaviour had been at all wanting. She clearly had her own fears and problems. I felt myself fortunate that I just felt sad, not angry or bitter. I was lucky that I had other friends who stuck with me.

We certainly go down some strange paths with this illness.

 

[Victoria]

I had a cooling of friendship with a girfriend when I first started not being able to walk far (due to ankle/foot pain & fatigue).

After a few hiccups in communications, I decided to let that friendship go (when she left another message on my voicemail saying "She was bored & fed up with her day & decided she may as well give me a ring". She said a bit more in the phone message, but her having cancelled so many social arrangements at the last minute in previous weeks, I decided to move on with my life & let the friendship go, and never returned her call.

What I found really hurtful was the fact that she had endometriosis & was often in pain. I had been thoughtful, considerate & understanding when she wasn't well & cancellled social arrangements at the last minute, for more than 3 years, but once the ill health & pain was on MY side, she couldn't be bothered.

She only contacted me when she was "bored", implying she was desperate for some entertainment & contacted me as a last resort????

Friendships are great, but when they end, one must let go & move on with one's life I think.

 

[Sasha]

I had a cooling of friendship with a girfriend when I first started not being able to walk far (due to ankle/foot pain & fatigue).

After a few hiccups in communications, I decided to let that friendship go (when she left another message on my voicemail saying "She was bored & fed up with her day & decided she may as well give me a ring". She said a bit more in the phone message, but her having cancelled so many social arrangements at the last minute in previous weeks, I decided to move on with my life & let the friendship go, and never returned her call.

What I found really hurtful was the fact that she had endometriosis & was often in pain. I had been thoughtful, considerate & understanding when she wasn't well & cancellled social arrangements at the last minute, for more than 3 years, but once the ill health & pain was on MY side, she couldn't be bothered.

She only contacted me when she was "bored", implying she was desperate for some entertainment & contacted me as a last resort????

Friendships are great, but when they end, one must let go & move on with one's life I think.

Yup - I'd been there every step of the way when my friend's mum was dying of breast cancer and when I was in need, nothing. She phoned me once to tell me that once her latest visitor had left (staying for three months) she'd "have time to see me again". Amazing.

I agree, best to let it go and focus on the friendships that are still working.

Some years later, when I went into partial remission and was back again working in the same place, she said she'd noticed that I was refusing all invitations to come and visit her new home, thought that something must be wrong, and hoped that when I was ready, I would tell her what it was! I sat down with her and told her (kindly) what it was and she was devasted. It was obvious that she really had had no idea of what she had been doing. She said "I must really have some serious problems about illness". She was so distressed I went back to check on her later to reassure her that I was just sad, not angry, and that it had all been a long time ago.

There is some extraordinary compartmentalisation and lack of insight going on sometimes. But better to be on the receiving end than the one doing it, I think - at least I don't have to feel badly about myself for treating a friend in need badly. Our consciences are clear, Victoria!

 

[sphynx on roundabouts]

I've been sick since childhood and I must admit that loosing friends as a child without a voice or means to understand it has hardened me for the times when friends have evaporated as an adult. The thing is that if I did not have this disease myself, I would have no comprehension of what was happening and how it engulfs a person's life. From the coverage in general media I would probably have the idea that it was a self-obsessed form of elaborate hypochondria. I get the sense from some neighbors, distant family and distant friends that they seem to have this kind of perception. Most of all, I'm devastated that I haven't been able to do anything to change this dreadful situation for the children coming up now who are in danger of following this same path. I think we have to look out for the children.

 

[zoe.a.m.]

I've been sick since childhood and I must admit that loosing friends as a child without a voice or means to understand it has hardened me for the times when friends have evaporated as an adult. The thing is that if I did not have this disease myself, I would have no comprehension of what was happening and how it engulfs a person's life. From the coverage in general media I would probably have the idea that it was a self-obsessed form of elaborate hypochondria. I get the sense from some neighbors, distant family and distant friends that they seem to have this kind of perception. Most of all, I'm devastated that I haven't been able to do anything to change this dreadful situation for the children coming up now who are in danger of following this same path. I think we have to look out for the children.

I think about this subject probably every single day... I try to imagine it from other points of view other than my own too and I am quite certain that it's not always that people don't think it's real or serious, but that they think it's really quite awful but there is no context. What I mean is that they feel alone in even acknowledging it and it's not like knowing that someone has diabetes or cancer or any number of illnesses, with those there is a sense that 'someone' is in charge and treating it and there is treatment, period. I do think people who already have a hard time with losing someone to this illness are given a choice almost wherein they can believe it is how we say or they can say, "well if it was really that bad, you'd be in the hospital (or you'd be on serious medication, or the doctor would think you were in danger," etc.).

I know what you mean when you talk about having hardened as an adult due to so much of this rejection. It's something that I struggle with and am sure that I have to keep struggling with to stay human. I had the unusual experience of, while I was in college, my favorite professor told me that she had CFS. I've thought about that for the past 10 years, trying to remember how I reacted and what I thought. I was always a caring and interested person, but I don't recall feeling any alarm about what she told me. If anything, I remember thinking that the name meant it wasn't serious (and that is really a weird but useful thing for me to remember). And I remember being more aware of her and wondering how she could take any of the toxicity of printmaking (though she was the one faculty member who wore a respirator and she was only in the studio when necessary). All in all though, when she said she had CFS, it really told me nothing. That sticks with me and I hope it will continue to and that this one damn thing will change.

 

[Galena1]

Unfortunately, losing the ability to be 'part of the crowd' is something that most if us have to deal with and accept. Difficult? Of course it is, but it does get easier (or perhaps less difficult would be a better way of putting it).

 

[Esther12]

We're only apes.

Our relationships are tied up to all sorts of rather unpleasent instincts and desires even if we're not fully aware of it (and we are often more aware than we'd choose to admit). I don't think that I'm any better than most of the people who abondoned me, and if our roles were reveresed I expect I'd have come up with some self-serving excuse for treating them badly. It's disappointing for those of us who were deluded into expecting more, but it's probably best to let go of any bitterness and anger.

 

[floydguy]

It really can be surprising who stands up and who fades away - or just plain disappears. I first experienced this when my father got cancer. People who you wouldn't expect to go out of their way were wonderful while some close, close friends who you would expect to count on never even called.

 

[zoe.a.m.]

We're only apes.

It is something to wonder if we're built to handle any chronic problems whatsoever... All of our innate reactions are pretty black and white. Peter Levine's Waking the Tiger speaks about people being unable to discharge trauma physically (which he learned by studying animal trauma for years). Certainly our ancestors wouldn't have had the advantages we have; likely almost everyone with CFIDS would have died of opportunistic infection, or, during the first viral (or other) trigger. I do think part of how our psychology works is to try to focus on what is directly in front of us and to move on (i.e. survive loss and perpetuate the species). And never-ending economic and health stresses weren't part of the early human repertoire either. But, as with many of our base instincts, we evolve to meet new circumstances--not to say we can evolve to 'normalize' everything that is a part of modern life, but certainly individuals can be expected to try. Nevertheless, you make a good point Esther.

 

[Dreambirdie]

Apes are pretty sophisticated creatures. I'm not sure how they really respond when one of their own family or "tribe" is ill, but I'm sure those who work closely with them, (like Jane Goodall), would be able to elucidate a lot more about that.

Knowing what I do from my own experience with animals that were part of my own family, and what I've read and gleaned from my partner who is a naturalist, I would not dismiss the animal kingdom as having a less developed consciousness than our own. In fact, I think this is a highly prejudicial and humanly superior attitude, which is based on ignorance of the natural world and being out of touch with one's own inner nature--as most of us have been trained/acculturated to do. Unfortunately, certain aspects of our scientific method were very influenced by the early Christian church, and their twisted belief that "MAN HAS DOMINION OVER THE EARTH." This reduced nature and all non-human creatures (and even women) to a "less than" status, and placed humans (white men in particular) on a pedestal as the "masters" of everything alive on this earth. It's now very obvious, what a disaster that has proven to be!

I have learned a lot from nature and from the animal kingdom in this long retreat from the world brought about by CFS. I have learned how to listen more carefully, to pay attention more closely, and to trust my instincts to a far greater degree. I have learned that the best way to find out who someone really is, is to give much less credence to what they TELL me, and pay much better attention to what they actually do. A lot of people can give you a brilliant earful about what they think/feel/know about compassion and commitment and loyalty and integrity, but do they show up when they say they will, and do what they had promised? Just that alone can be VERY revealing.

When I look back at all the people who disappointed, hurt, abandoned or even hated me for being ill, during these 33 years of CFS, I have to admit that some part of me just knew that would happen... even if I hoped against hope that it wouldn't. Even though it was often painful to face the truth, in some ways it was a relief to let go of the bad friends, the ones who just did not care and didn't want to. In many ways this illness has been a great filter to help sort out the little chunks of gold that proved to be worth keeping. I am very grateful I found a few of those.

 

[Dreambirdie]

WHAT SEPARATES US FROM THE APES.
Here's Jane Goodall, an amazing woman, on her experience with animal beings.

[video=youtube;51z7WRDjOjM]http://www.youtube.com/watch?v=51z7WRDjOjM[/video]

 

[Rrrr]

I had a cooling of friendship with a girfriend when I first started not being able to walk far (due to ankle/foot pain & fatigue).

After a few hiccups in communications, I decided to let that friendship go (when she left another message on my voicemail saying "She was bored & fed up with her day & decided she may as well give me a ring". She said a bit more in the phone message, but her having cancelled so many social arrangements at the last minute in previous weeks, I decided to move on with my life & let the friendship go, and never returned her call.

What I found really hurtful was the fact that she had endometriosis & was often in pain. I had been thoughtful, considerate & understanding when she wasn't well & cancellled social arrangements at the last minute, for more than 3 years, but once the ill health & pain was on MY side, she couldn't be bothered.

She only contacted me when she was "bored", implying she was desperate for some entertainment & contacted me as a last resort????

Friendships are great, but when they end, one must let go & move on with one's life I think.

yes, i have spent much time and energy supporting others during their crisis or health issues and in return everyone fled when my life fell apart 2 yrs ago. it was like a repeat, but with a new set of friends, of my originally getting ill with me/cfs 20 yrs ago.

 

[sensing progress]

I know what you mean when you talk about having hardened as an adult due to so much of this rejection. It's something that I struggle with and am sure that I have to keep struggling with to stay human. I had the unusual experience of, while I was in college, my favorite professor told me that she had CFS. I've thought about that for the past 10 years, trying to remember how I reacted and what I thought. I was always a caring and interested person, but I don't recall feeling any alarm about what she told me. If anything, I remember thinking that the name meant it wasn't serious (and that is really a weird but useful thing for me to remember). All in all though, when she said she had CFS, it really told me nothing. That sticks with me and I hope it will continue to and that this one damn thing will change.

I'm wondering if you've had any contact with your professor since then now that you also have CFS?

 

[zoe.a.m.]

I'm wondering if you've had any contact with your professor since then now that you also have CFS?

I have actually. We are about 3200 miles apart now but we were able to email back and forth for a while about it. She was glad that I was seeing some improvement with certain therapies and she had actually recommended I read The Web That Has No Weaver (way back when I was only 19!), which ended up being a pivotal book for me later. She shared that she had worked with some very-alternative healers and felt she was much better, just that she had to be careful. I think she's been following the candida diet for close to 20 yrs and it sounds like that is what helped her the most. I no longer have that email address, but I think I have the messages archived. We fell back out of touch as can be the case with my not being able to get back to visit and her school years being busy. It's interesting though that, back during the school days, she was thought of as a sort-of serious person who didn't have much of a sense of humor, and it's all too easy now to see that she was struggling with energy and probably just trying to hold it together very often. I think her art work speaks to her experience and her strength and it's something, again, that I could only see later with this perspective.

 

[sensing progress]

zoe, tried to send you a PM but got following error:

"zoe.a.m. has exceeded their stored private messages quota and cannot accept further messages until they clear some space."