This week I've lost two friends. Well, 'friends'. And well, the truth is never as black and white as when we first write it. One of these 'friends' was never really a friend, and I had no idea until she ended our friendship over email for no particular reason that she could state, but then, in retrospect, I realized that she had never really seen me. The other 'friend' was never really a friend and I knew it and have known it for a year and a half. I did get a little tricked though, because when I would tell her I was waiting for her to show up as an actual friend, she would tell me she never had been good at showing up for other people and would change...really she would. She didn't.
So what's my point? My point is, I think both these people could not handle my being chronically ill.
Upon being 'broken up with' by my friend over email, I posted some statuses on FB about being sick and losing friends. The responses from people who go through the same thing were many. I realized just how prevalent it is for us who are chronically ill to get abandoned, and often to get attacked as we get abandoned. Is this me self-pitying me and all the rest of us? No. This is me noticing a pattern, a very real pattern. This is me acknowledging it and speaking about it. This is me feeling like it is deeply important.
We talk about spreading awareness. I think this is an important part of what we go through. Yes we go through pain, tremendous pain in fact. Yes we go through surgeries, loss of bodily functions, loss of mind and sanity. Yes we go through environmental sensitivity which isolates us from others and from community. And YES, while we go through all this, we also go through being attacked and abandoned by those people who we thought truly loved us.
There are a string of answers and questions I've been asking myself. Why do people abandon sick people? Because they are afraid. Why are they afraid? Because they don't want to be reminded of how fragile life is or look their own mortality in the face. Why don't they want to be reminded?
That last question was a bit tough. In the end I came up with this: Because our society teaches us not to want to be reminded. Our society teaches us that what is of supreme importance is working and making money and spending that money. If one is sick, one can't do that, so our society goes so far as to teach us to pretend we are not sick, when in fact we are, so that we can keep on working and making money and spending that money. Our society teaches us that sick people who can't be diagnosed aren't to be trusted and are probably just lazy or depressed or users. On the other hand, there is what society does not teach us. Our society does not teach us to really listen to each other, and to believe each other. Our society does not teach us to love, to have compassion, to help. Thus, when we become sick, those around us are hit twofold. On one hand they have been taught to tell us that we are not really sick and to deny, deny, deny. On the other hand, they have not been taught how to be humanitarian towards anyone, let alone someone suffering. Thus, they leave. They leave because they do not have the tools to stay.
I am interested to know what anyone else thinks about this.
Side note: There are individuals in my life who are not sick, do not have Lyme, and yet they stay. These people do exist. Unfortunately, they are few, and those who leave are many. Fortunately, each one of them is worth about one hundred of the others. But actually, I don't think it's fair to even compare them. For that would mean that my 20 amazing friendships would be equal to 2,000 terrible friendships, but that is not the case. 2,000 terrible friends is actually equal to having no friends at all. So, I am blessed, and yes, sometimes I forget that, especially when one of the amazing friends turns out to be a terrible friend, but my forgetting does not alter the truth. The truth remains...I am blessed.
Boy does this hit home! I worked 35 years in the local healthcare community and had positive relationships with many healthcare providers UNTIL I got sick. Now nobody wants to know me...suddenly I have mental issues.
ReplyDeleteI have a few close friends who stick around but they don't really try too hard to understand my disease and its treatment. They are nurses who I would love to educate so they can help others but they resist.
I don't really have anyone who would step in if I became totally incaptacitated, family included. My disease is not discussed, no one feels "sorry" for me like the other family members diagnosed with cancer. My disability is questioned.
Recently I was banished from sharing a room for an out of town wedding because "you might get too sick again and we'd have to bite your portion of the cost". Any one of the others could have something happen which would prevent them from making the trip...but I was an undesirable because of my disease and wasn't consulted...my husband would have paid my portion even if I didn't go.
Until Chronic Lyme is recognized as a "real" disease we will constantly be questioned.
This happened to me when I had cancer~ Everyone thought it could rub off or they didn't want to see me deteriorate before their eyes. It is very sad we get ill and then have to deal with this loss too. I am sorry this happened to others.... debj
ReplyDeleteYour story makes me very sad. I, however, can see it from the other point of view. I have a chronically ill friend and we are starting to grow apart. She's always been a very needy person (even before falling ill) and I'm finding it more and more difficult to cope with her needs - I have a young family and a terminally ill father who need my attention more. We live in different countries and I'm finding it harder to speak to her honestly about my life - she sometimes makes small, hurtful comments that just makes me angry. So I've stopped telling her about significant and important things happening in my life. Whenever we talk, it's always about her and her health - or lack of it. It can be very tiring.
ReplyDeleteYou are not being fair to your "needy" friend. While I do not know exactly what she did that made her "needy" in the past, anyone suffering with an all consuming illness certainly would be needy now. It is sad that you cannot value a friendship except by the amount you get out of it. If you truly understood what your friend is going through, you should feel glad to be able to offer them whatever help you can provide, even if it is only offering your ear to listen to her. The few friends I have say they don't know how to help me, and one who lives far away, I tell that his just being there to listen to me and offer a few words of understanding, plus telling me all about the fun things he has been up to, is far more helpful than one can imagine.
DeleteBefore I was sick, I helped anyone who crossed my path, even a total stranger. Sometimes the person would be amazed that I helped them and say, "what can I do to show my gratitude?" My answer is always the same, "help the next person you come across in need, and pass along my message. The world will slowly become a better place, one person at a time."
I think you missed the point of this writing. It's not so much about a personal situation or a single instance of friendship. It's about a widespread pattern, and underlying societal problem that is there, no matter the reason you and your particular friend are growing apart.
ReplyDeleteThank you for this. Having a really hard time, early 30s, got sick, lost best friend, lesser friends, and husband. Going through divorce while bedridden, lost career, ability to have kids, etc. What happened??? Went from super active and popular, to whatever this is. Loved the people in my life - but see that I chose people who are afraid of anything but happy and healthy, who don't know how to be there emotionally, who can't live with anything but a happy ending. Hence I'm not really sick, there must be a cure, it must be my fault I'm not seeing the right doctors, maybe if I just try this smoothie they drink...our culture does not allow us to think doctors are anything other than gods, and that people can really lose their livelihoods and bodies but not die, that it may not really get better. When I find things to be happy about in my new life - there are many - they tell me I am depressing because those are not real things to be happy about. I think they are wrong, I am so grateful to still hear, to have my dog, to see colors, to feel showers (even with a shower chair). I can't help that their view of the world is actually more depressing than mine, that they have so little to fulfill them while I am in ecstasy over a good meal. We have grown apart because they think my life is pathetic, and I feel unseen as a person because I can't share stories about work and weekend hobbies anymore. Small talk is hard now. And when I am in really bad pain, when I feel alone and scared and sad, there is no one to call. No one wants that phone call repeated - it's a one time thing. They dig you out, but we are conditioned to feel that we need to solve other's problems, so they feel defeated when you call a year later with the exact same problem, they feel helpless not to fix it for you. They miss the fact that I don't want them to fix it, I just want a distraction for the moment, a laugh, someone to say it is ok, or I'm sorry you feel bad. Even when I explain this, they don't believe me. They feel inadequate, so they leave. Worse, many seem to feel that they are stupid for coming to me with their problems because these can't compete with mine. But I want to feel useful! I never felt that their problems are insignificant, all pain is pain! But they shut me out anyway, and shirk away rather than just tell me so we can work on it.
ReplyDeleteI just want someone to give it straight: I am afraid you will die. I am afraid you will live but not be normal, that I will have to make plans around your sickness and not want to hang out with you. I'm afraid to admit I think sick people are lame. I feel like you're a saint now because you're sick, and I don't know how to relate to you like a normal person. I don't know what to say. I ask you how you're feeling every time we talk, and then you tell me - and I don't like the answer. But I used to love you and I don't want to lose the old you - can we save it? cont'd...
cont'd...
ReplyDeleteI would say yes, we can, and if you don't want to hear about my illness stop asking how I feel because I would be lying not to tell you I feel sick (and I am so tired of the question anyway). It is part of my life now. Don't ask me what I did this week and expect me to tell you something other than 'I watched a lot of TV' or 'I went to the doctor.' But you can tell me what happened to you and I will be happy to talk about it - I live through my friends now. If you need me to help that is also great, as long as you are there for me sometimes too. Don't ask me to come to your big party late at night, but do offer to stop by and watch a movie and order pizza, no pressure to clean up or entertain. If you want to be close to me, learn about my illness just as I learn a little about your job or your kid's learning disability - it is a huge part of the way I experience the world. Then you can stop asking me stupid questions and I can stop being annoyed that you don't understand me anymore.
Can't say this stuff to my friends, because they have run away from the situation because they are afraid to have this talk. They'd rather just not return my calls and then send an email months later with a lame excuse and the same stupid questions, am I any better? what have I been doing lately? I will send a reply that I went to the doctor's and am trying some new medication I am really hopeful about. They will not respond but send the same stupid message a few months later, hoping for a different answer, until eventually they stop writing and we "lose touch."
The worst thing? The people I still hear from are the few I don't know so well, whom I met after I got sick. They are sick too, or they are well but have low self-esteem and pretty low standards for who they spend their time with. I have to admit I don't respect them really, they are nice but are kind of vacant and have little personality to offer other healthy people. They like that they are easily accepted and needed by sick people, but they are not very well liked by those who can choose friends. That sounds terrible, but it is true, we attract a lot of bottom-feeders, negative people and people who prey on us, and yes, those who have nothing better to do. Some people are great with illness, but I think you have to have known them before becoming ill, and they just love you enough to stay. It's hard to meet people from my bed, and the few I have will suck the life out of you. So I'm up late tonight with a phone full of numbers of friends I don't have anymore, an ex who texts me constantly trying to get me to help him meet a new wife while we're still not divorced, and this message I needed to write. Sure, it could all be my fault. Part of it is, because I picked these people. But I was a kid when I met most of my friends, and these new people I was really desperate and lonely when I met. And it is just not easy for anyone to know how to deal with serious or chronic illness - just because I have it doesn't mean I'm the expert - it's hard for me to deal with these changes too - and my friends are even more clueless. I just wish they would discuss it with me before they "lose their phone and forget how to contact me" for months, several times in a row...I live far away from my old friends and I can't be there while they have major life changes like weddings and kids because I am too sick to travel. Maybe we can't stay friends through such a loss of common ground. But I still love them and would have liked to try.
Wow! I feel your pain. Look me up on facebook if you have an account and friend request me. My name is Glynda Mekonen and we can chat and become friends maybe? I definitely do not have low self-esteem and am usually on the positive side, but yes, I do get 'down' occasionally. I can be uplifting, am intelligent, and have a sense of humor. Let's Chat!
DeleteThis is all so true, when my father was diagnosed with prostate cancer I was amazed at how many friends just kind of dropped away, I thought sickness was supposed to bring families and people closer but no, people run the other way, they do not want to be faced with sickness. It is really a reflection on themselves. I stick my parents no matter what and always will.
DeleteYeah, it's been a long time since you wrote this, but I am having a bad day and actually googled "chronically ill, depressed, and abandoned" and came up with this site. I feel so much like you feel many of the same things I do. I am 35 years old now and have been chronically ill since I was 22 (then a grad student in college and forced to drop out when I became too sick to continue). Since then, I've lost every friend I used to have,yes, all of them. My illness was the final straw in my parents' marriage because my Mom insisted on taking care of me and my Dad didn't want to be "held back". When he left, he actually blamed me (called me crazy rather than ill - back then I had no diagnosis, now I do) to his family and to my own brother and sister. I barely speak to him now and, when I do, he has yet to apologize. Growing up, my sister was my best friend (she was only 15 months younger than me). One day, when I could not breathe and was on our front porch with a serious asthma attack, she (home from college on a break) yelled that she hated me and that she would not come home again. She did come home again of course, but we no longer speak, though I've tried. She says I am a baby and a leach. I see my brother occasionally, but, though we used to be close, we are not any more. I have had aunts and uncles tell me to my face they don't believe I could possibly still be sick and must have emotional problems. Everyone wants there to be a magic cure (one person at work said "isn't there a pill you can take?") but there isn't. My Grandparents (Moms side) stuck by me, and also have helped me out so much financially that I hate myself. My Grandfather is almost 80 and still works two jobs to support me (though I also work full time, but don't make enough to live on) from afar. Most of the time I feel like my whole family would be better off if I had died. For a long time, I lived at home. I worked, delivering papers 365 nights a year, in all upstate ny weather. My arthritis got too bad and I had to move away. Now, I work full time early mornings in a department store unloading the truck and stocking for barely over minimum wage. I did five years old college and have massive student loans I cannot repay. I really don't have friends here. Most of the time I hurt too much to care but feel isolated because no one understands and no one even wants to hear. As I write this, it is my first day off in a week and there are tears streaming down my face. I live alone. I hurt constantly, to the point where I can't sleep and can barely concentrate on anything. I have my puppy (oh, did I mention, the animals I left behind when I moved - both dogs euthanized within a year by my family - I didn't want to leave them, but where I moved to back then didn't allow dogs). I have had no Christmas since I was 21 years old. I asked my Mom this year why no one in my family had ever tried to include me in the holiday. She has no answer. I have no answer. I feel like every dream I ever had died a long time ago. I feel like a huge part of me died too. One woman who I work with, the only one I feel like is truly a caring person, listened to me one day and said "Jen, it's not your problem, it's not your fault, it's theirs". She's almost 70, but it was the first time anyone took the time to actually tell me that and mean it as more than a platitude. Well, I've rambled, told my life story, and gotten a good cry. Probably no one will ever read it, but here it is...
ReplyDeleteTo the writer of this blog I cannot say thank you enough for writing about this issue. I have often searched for a site that may have something dealing with this tragedy we suffer through, but found nothing.
DeleteTo Jen, I would like to say that your story is the closest to mine. I too have lost all my friends except two or three, who do not care to learn about my illness and they still hurt me many times by saying or doing ignorant things, and rarely spend any time with me (try maybe once a year) and they live nearby. My family hurt me the most, and my mother became the "gang" leader for the family in convincing them that I was mental and not sick, just lazy, and there would be no more visits to my home for holidays (I was the one who took on this job every year for over 30 years, since I was just a teen, because my mom hated to cook or decorate. I took on the tremendous cost of making huge dinners for Christmas, Easter, Thanksgiving, and Mothers' Day and no one ever offered to help clean up, wash a dish, or help pay for part of the cost.) for I was too sick to cook and my daughter stopped helping me clean and decorate. She actually said that no one wanted to come to a stinky, dirty house! Even more hurtful, my younger brother called about a week prior to my mother's mean call to say that he hated my f*ing guts and always did! and that my mother and daughter also hated me! Before this, I always got along with my brother and loved him and believed he loved me. And, how dare he say that my daughter and mother did too! It was so hurtful I wanted to die. My brother never even curses, and to hear him say what he did meant that there must have been a meeting about writing me off as a family member!
About two years later, my daughter showed up and I asked her why they hate me, and her answer was that I was such a drama queen about being sick! Another knife in my heart. I have two grandsons I never get to see who live close by, because she now wants nothing to do with me. I can still recall the first few years of being sick and keeping it secret while going from doctor to doctor getting only insults, or told I was crazy, or shuffled off to the next doctor.
When I finally got my diagnosis I had advanced neurological Lyme and many co-infections. I educated myself as much as possible about Lyme, then realized that what my LLMD said about me probably never fully recovering and having remissions, I knew I needed help. I bought a copy of Under Our Skin and killed myself to make a full gourmet dinner (as my family expected from me) so that my mother, daughter, and brother would come over to watch the DVD. After dinner, I started the movie, which I hardly think is boring, and after only about 15 minutes I caught my brother rolling his eyes at my mom, then she stood up and said to stop the DVD, they had seen enough! They then took off while I cried and my mother said, as if to console me but she always means things quite differently, "Don't be upset, it was just a movie."
I now spend every holiday all alone except for my best friend, my Pug, and have no dinner, because I am too ill to cook all that without major help, and I cannot afford it. I especially miss decorating, as I was a very floral designer. I lost my job, went bankrupt, and and am unable to go out alone and cannot drive, so I get no chances to socialize. I am so very lonesome for just someone to even talk to. I also love to help others and have posted my offer to other Lymies on many group sites with my phone number and never got a single call. If anyone here would like to talk, especially if you are afraid, lonely, or just want to vent, please call me. I also would love to be able to call you. Dona, (610) 616-3880. I also have Skype and my account name is donadelamoominlove - send me a request and say you are a fellow Lymie who saw this posting.
Hey Jen, I just read your post after googling "ill and loosing friends." I do not have what you have but an illness with similar symptoms called CFS/ME. I have been ill for about 8 years now and it's painful to notice the slow decline in friendships, people not responding when you so obviously need an acknowledgement of some sort so you don't feel abandoned etc etc. You have it tough but I do understand, goodness, you have been through a lot. I'm glad I came across this post tonight so that you might be able to check the site and see my response, for I would hate the thought of nobody replying. Your circumstances are tougher than mine but as I said, I get you. If you reply to this post I will give you my email address and perhaps we can help each other through? I too feel isolated, lost, let down and misunderstood. I don't know why people can't cope with another person being ill, I'm trying to figure that out. People can be very cruel and have no idea the devastation they cause to feelings when they ignore, pour scorn or disbelief. I hope you see this and feel less alone. Hugs and best wishes, Valerie XX
ReplyDeleteIt's not just Lyme Disease. My husband's back was seriously injured in the 1980's. We lost all of our friends because we can't get out and socialize. Also, no one wants to know us because they would feel obligated to help us. We've been told we don't have enough faith to be healed and that we are too needy, although we didn't ask for anything. Our own son who grew up with a dad in pain and increasing disability pretends his dad is not really ill and acts like a minor issue was an unpardonable sin to have an excuse not to help us. I feel so sorry for those who have no one to help them.
ReplyDeleteThere was one other thing I forgot to mention that I found very helpful. If you are not familiar with the Invisible Disabilities Association, I highly recommend you view their website and especially look at their educational booklet: "But You LOOK Good: How to Encourage and Understand People Living with Illness and Pain (which is found on their Educate page). I bought several copies and my LLMD kept one on display in her waiting room, because it was so helpful. It felt as though someone had read my mind and touched upon every issue I ever encountered and provided amazing insight into what the other person may be thinking and feeling and gives wonderful suggestions on how to respond. They also have many other great short pamphlets in their store, and touching videos on the YouTube site from people who will humble you.
ReplyDeleteTheir web address is: http://invisibledisabilities.org/
This succession of posts is completely heartbreaking. I have a chronic illness since ten years, and even since 4 years it has improved and I can have half of a social life, I have never been lonelier. The sad part is that even before the chronic illness I was always sickly, with many flues, almost each month, and
ReplyDeleteI believe that is the reason why my life was so empty of friends or relationships. The only way I could make friends with someone was to live with them, but now I am getting older and it is difficult to find flatmates who are not students, also with the illness I can't have noise around. I usually try to be positive and put myself out there as much as possible, but some days I just feel defeated.
Right now I had pneumonia for almost 40 days and not one visit or one phone call, my mother talks on the phone but she is old and when she will be gone I will have no one. I wish there were other ways of meeting people, as someone said in a previous post support groups are great but even there it is difficult to make personal relationships. I wonder if there is a way out this situation.
Dear everyone,
ReplyDeleteI posted the long comment on 5-16-12. My illness makes me forgetful, so I forgot I posted here before or even read the website, and ended up back here 2 years later reading. I saw my own post, and realized that was me, lol! I thought probably no one was reading this page anymore and so would never see my post, but I see others posted and feel similar feelings. I was thinking maybe some of us could try keeping in touch by email, or even perhaps create a chronic illness support group by Skype - I was in one before and it went well, but I didn't really connect to the people in it because they were too busy being angry to be any fun to talk to, or giving simple solutions to people's problems to really listen to the pain others were feeling and just empathize. Even sick people don't always have so much in common, despite what people think! :) Anyway, if you'd like to maybe connect to others who have posted here and possibly even try a regular chat group to talk about these issues, leave some info for others reading here to try to contact you. If you'd like to contact me, write to giselle 259 at yahoo dot com. Make sure to put in the subject line "The Lyme Spot" so I know what it's about. I have M.E. and Fibro, and other stuff because my immune system doesn't work. It makes me bedridden a lot but it doesn't mean I stopped having a personality and the feelings of a normal person! I am pretty guarded with my heart and my privacy, but I feel today like this is a good time to connect with people and see if I can at least make some email pals with people who get it.
By the way, as an update, 2 years later I have removed all of those energy-sucking people from my life. I still miss the good things about them, but I find that my life is much better as a whole without them. A few friends I talked to and found that they wanted to work through it, so I have sort of loose relationships with them right now that are positive, but not sure where they'll go (especially since I can't get out much to see people in person and I live far away from all of them). I am at a transition point, where I have none of the bad stuff, but since I cut everyone out I also don't have a lot of connections with anyone now! I'm too sick and busy caring for myself to put much into making new friendships yet, because realistically I don't have a lot of energy to put in to being a good friend. But I feel positive about where I'm headed and hope to make new friendships in the future based on what I have learned through this experience - what I need from a friend, what I can give as a friend, and what I'm not willing to waste my energy on. I have to say, I hate this illness of course but in many ways it has been the greatest thing to ever happen to me. I would not have learned to value myself or my time any other way, honestly. I was too stubborn, too busy trying to make others happy to take care of myself. Trying to be a "good girl," I gave too much of myself away. Then when no one gave what I gave, I was upset. But I started the relationships out never asking for anything, they were all a bit one-sided, so that was bound to happen when I finally needed something back. For those still out there suffering, take heart. There are many like us, you're not alone even in being alone! And in my perspective, if you keep working on valuing yourself and your time, and taking good care of your body even though you can't be Wonder Woman anymore, things really do get better. Give yourself time, and a whole lot of love. The hardest part I think has been me being angry with me for not being able to do the things I used to do, and that frustration probably comes across to other people. But I'm working through it, and I don't have all the answers but I think things are getting better.
Do u still have 20 friends? I have 3-4 tops.
ReplyDelete