Wednesday, July 21, 2010

Have you lost friends when you acquired a chronic illness?

Image found on Shorpy

I received an interesting question the other day from a reader who asked why some of her friends after learning of her Sjogren's syndrome diagnosis just don't GET IT. She shared that she had an incredibly supportive husband, but:

Most of my friends, though, don't remember that I have a "thing", which is fine except when I can't participate in something because of the way I'm feeling or maybe I can do something for a short time. They don't remember my "thing" and keep asking me to do the particular activity. For some reason I hate saying "I have an autoimmune disease" or "I have Sjogren's syndrome"...... And because my friends don't remember what I've told them before, they make me go over the whole thing again, with a puzzled look on their faces as I explain, etc., as if they don't see the problem. And then there are always those friends who quiz you on your lack of participation in an event, and then when you finally start to answer them, their eyes glaze over.....
Anyway, most of the blogs I read are from people, like you, who talk about the wonderful, supportive friends they have. Maybe I need new friends! :-)

First, I want to apologize if I have given the impression that all of those folks that I have called friends in the past are still part of my life now, because to be honest, many of them aren't. They, like many of the reader's friends, seemed unwilling or unable to comprehend my disease 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 seven 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, went out and purchased a book about Sjogren's Syndrome. She gave it to me only after reading it all herself. Her gesture told me volumes about the sincerity of our friendship. 

So yes, I do have a few wonderful friends and they are more precious to me now than ever. But their number is far fewer than I would ever have imagined ten years ago. It helps me a little to know that this, to some extent, can be chalked up to human nature. Others have described this less than ideal human tendency much better than I ever could: 

John Churchton Collins said, ~ In prosperity, our friends know us; in adversity, we know our friends ~
~ In time of prosperity friends will be plenty; In time of adversity not one in twenty ~
English proverb

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?

I wish I had the answers to these very difficult questions.

In her book, A Delicate Balance: Living Successfully With Chronic Illness, (Perseus Publishing, 2000, pg. 191) author Susan Milstrey Wells delves headlong into these same issues. She discusses the many ways that chronic illness may impact all of our relationships - those as a spouse, a child, a sibling, a parent, a co-worker, and as a friend. She sums up her chapter regarding relationships by saying:

"Chronic illness throws a monkey wrench into our relationships. We may seem as foreign to the people who love us as if we had begun speaking a different language. Our family and friends still want us to the mom who works, the dad who plays baseball in the backyard, and the friend who meets them for lunch. In turn, we want to be treated as the same loving spouse, parent, and friend we always have been. A large part of the responsibility for making those relationships work falls to us. We have to educate our family and friends about our disease, allow them to express their emotions openly, and clearly state our limits and our needs. Also, we have to expect these changes to be unsettling.

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.

Well said.

How about you? Have your friendships and other relationships suffered when autoimmune disease entered your personal life? 


RED said...

My family has been just wonderful! My friends, that's another story, unfortunately. Some have just stopped calling, and some just look at me strangely when I say that I can't go out, say, on their boat with them for the entire afternoon, or because I can't keep up with their cocktails--too many pills to drink much anymore!

annie said...

If it wouldn't be for the support of my family, I would find it even more difficult to deal with this illness. Like Red, I'm very grateful for them. However,in regards to my so-called friends, that's another issue. They don't seem to understand you can't host dinner parties the way you used to, shop till you dropped (which now can be literal!!) or go on trips with money you don't have. They don't get the fact that I can no longer hold down a job...because I don't look ill... so I'm tired of explaining what I have to people who don't really care. Unfortunately, even with chronic illness, we still need comfort, laughter, and companionship. Strangely, there are days where I miss the camaraderie of the work place and its routines.

TRONMomma said...

I have lost many friends, and the strange thing is that we became friends after I'd already had my autoimmune diseases, so it was even harder when they all of a sudden started to have trouble with my limitations and issues. I thought they understood and were able to be supportive, but this was not the case. On one occasion, when I wasn't feeling up to doing activities that the rest of the group wanted to do, and told them all to go along without me it was fine, one friend said to another (I wasn't supposed to hear, but walked in and DID hear) "I really think she's faking this to get attention because it always has to be about her. She doesn't LOOK sick or anything". That just about killed me. So now I only have a few friends that care enough and understand that even if I don't seem sick by what normal sick looks like, if I say I am, I am, and they will be by my side to support me.

connielea said...

Well I have lost friends who don't know how to laugh with you when you tell them how you yarked in the shower that morning because of your illness. Some people are just squemish and can't laugh at ick factor that comes with a chronic illness. And they don't get the "chronic" part. The up's and down's are more than they signed up for in the friend dept. I always love the "you don't look sick" part. A real friend knows how long it took you to "not look sick" on the days when you venture out in public. My real friends can look at me an know if I am having a good day or a bad day and stick with me for both. Friends, we need them and we need to be them.

Abigail.R said...

I've been browsing through several articles on this topic and this was a good one, thanks :)
The thing I find most frustrating is the fact my friends never seem to understand that I don't want to stay at home all the time either. It's hard not to get upset when they keep pestering me to go out and I hate to use my condition as an excuse. Fatigue is the hardest symptom because, unless you have suffered from it, I think people find it difficult to imagine tiredness to be so debilitating.

ATinMKE said...

One of the hardest parts about Sjogrens and RA and Raynaulds for me has been the friendship and relationship department.

I have been unable to make my friends understand why I can't be out for very long, and am embarrassed with the questions of acquaintances when I leave events early. I have been told "If you wanted to, you would stay" which couldn't be anything further from the truth. I want to do lots of things I can not do anymore.

I also was going through a relationship break up with someone I have been with for the last 5 years during my diagnosis. I was sick for two to three years prior to diagnosis, which I know now from some blogs is a very short time period. This sickness negatively affected my relationship with someone I loved, and by the time I knew what was really causing the problems, he was packing his stuff and moving out. Feeling abandoned to this degree is not something I have experienced before, I believe because of the overwhelming nature of the diagnosis.

Anyway, thank you for your blog, it has been really helpful.

Anonymous said...

I started this path with a group of friends who, I though, were very close. I found I just had to re-evaluate the situation and change my expectations. My efforts to get them on board with my situation were not embraced, and when I had really bad times they would get angry that I wasn't myself.

I read something today about how moving on into acceptance sometimes means choosing friends based on how they deal with your illness (I have autoimmune issues and chronic pain). But it does hurt to find that the people you thought cared really aren't willing to allow you the changes you need to make to survive.

Anonymous said...

I think you hit the nail on the head when you said that losing friends is just a matter of human nature. I was recently diagnosed with Sjogren's after 17 years of searching for a Dr. that would take me seriously when I said that I'm exhausted, in pain, not thinking clearly, etc., etc. & have already lost quite a few friends. The reason I suspect it's human nature is because I didn't lose the aforementioned friends due to my health, or lack thereof, but instead lost them after my son became a victim of a violent crime (he's alive & doing well considering everything he's been through). You think that your friends & family will always be there for you when the chips are down, but what I've discovered is that most people don't REALLY want to know how you're doing unless they can relate to what you're going through. So I'm hoping & praying that I've already reached the end of the "friendship fallout", but just in case I haven't, I think I'll look to "you" (everyone out there in the blogosphere) for support when it comes to dealing with this baffling illness. Finding this blog was like taking a breath of fresh air for me. At this point I'm too tired to try & make anyone else understand how I'm feeling or what I'm going through, but I don't need to because you already do understand. I think that's what I've really been searching for over the last 17 years, someone who understands. So THANK YOU for understanding & from here on out when my friends ask me how I'm doing I'll just say I'm doing "reasonably well" & leave it at that!

kimmy said...

just found this site yesterday and can not seem to get away from it! Thank you so much for your obvious compassion and help in educating us. When I read the title to this section I began to cry. I have been unable to participate in life for the last 2 years. Thanks to a spontaneous rupture of the tendon in a finger joint the dr.s are now taking my complaints of the last 7 years seriously. Friends, even those I thought of as family, were the first to flee, as if I were contagious! Even the " I'm just calling to check on you" calls have ended. Since we know the pain this causes let us all be the ones to keep hanging in there with others when its our turn. It really hurts but I just gotta remember that they are probably doing the best they can.

Anonymous said...

So it's not just me! Having to explain my illness over and over, the attempts to catch me out in a lie etc etc. I now have a circle of acquaintances with shared interests. I'm not well enough to cope with friends. Especially caring friends.

Sjogster said...

I'm fairly lucky in that I haven't had to give up work or anything yet, though to be honest, there are days when I find it takes every ounce of my energy just to get up and get myself and my family out of bed and to work/ school.

I do think that, if I have to give up work, I will never see some of my friends again. I don't think they assume I'm attention seeking as I rarely discuss my illness, but I do agree that, in general, people find it really difficult to relate to something they have no personal experience of. I can't promise I'm any different. It has helped some of my friends to think of SS as permanent flu as the symptoms are very similar and most people agree that, although flu pain is not agony, it is very difficult to deal with chronically.

I don't always feel that I'm understood, but it gives me some consolation to know that I'm not the only one and so I smile and say I'm fine when people ask, but I'm not really.

Anonymous said...

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 cam 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!

Anonymous said...

I think people want to be understood so badly when they suffer endlessly. And it seams as if people dont wanna understand. Now that im working sick my friends dont call n dont understand how much of a struggle it is. In exhausted.

Anonymous said...

I'm a friend who did and does understand. I watched a co-worker go through working in misery, eventually becoming unemployed because of illness, floundering through the diagnosis nightmare, etc. I helped her get to MDs and specialists for testing, listened, let her needs drive the amount of activity we did, etc. When she got the Sjogren's Dx, I made a point of doing some research and learning what I could (I found this blog!).

I understand the depression and brain fog and frustration and depleted energy. But I did eventually burn out on the fact that all of our time together consisted of her ranting on and on and on about her health and her troubled life.

Never asked how I was today. Never went out of her way to give ME a call when I was having some ups and downs. Never listened when I said that I really couldn't take her ranting about everything today, because I had already had a bad day myself.

Finally decided I didn't need a one-way friendship, even if she had a valid reason to be in need of support. It hurt me to stop calling or seeing her, but I had no choice for my own sanity.

Chronic Illness is a big challenge. It doesn't excuse wearing out your friend.

Anonymous said...

I am in my thirties and most of my friends haven't experienced any serious bad health, unless you count a difficult birth, which is an acute condition. But understanding chronic illness is beyond most health people.
I wonder though if that lack of understanding is in part an unwillingness to want to know...maybe its just too confronting for the average friend? Same thing happens when someone dies - people can't think of what to say or make it better so they shy away...
Its desperately isolating for the sick person though, hey? My rock is my mum but the though of spending another New Years Eve alone with mum is really depressing me....just because i am housebound alot doesn't mean i like it - I am going out of my mind with just passing time alone or the only outings being hospitals, doctors and labs. Does anyone want that existence?
Anyway, I am off topic now...I just think that to be a friend to a chronically ill person you have to be willing to hear the answer to the question "how are you?".

Anonymous said...

I have lost many, many friends to chronic illness. I know what it feels like and it sucks. But, the ultimate point is that if your friends can't be tolerant and understanding towards your Chronic illness than they were never really true friends to begin with. In life we never loose friends, we just learn who the real ones are. If your friends can't handle your condition that is them thing, not a you thing and you cannot allow yourself to feel guilt about ditching those who give you a hard time about things. You are sick, YOU have limited energy and that energy is too precious to waste on people who don't care to take the time to understand. I mean sure, I would love to have more of a social life, but then I remember the demands of said social life.....of being able to go anywhere and do anything whenever possible. I remember it's not possible anymore and it's okay. The thing that makes me the maddest is that if you do work up the energy to go see a friend and act normal and have a good time with them, then they turn around and have the absolute nerve to tell you they think you faked being sick in the first place! Like thanks for appreciating my being here, I could have stayed home and been a lot more comfortable. It's the judgemental bull from healthy people who have maybe been sick twice in their life that maddens me to no end. If they have never been sick, who are they to question, doubt us, and give us a hard time! Anyway, sorry, just felt like ranting and I hope that's okay. We're all in the same boat here unfortunately.

Anonymous said...

I've recently been diagnosed with Sjogren's after a few years of being diagnosed with multiple other things - Guillain Barre, Lyme's Disease, POTS, GERD until a rheumatologist pieced the last few together. Keeping positive relationships with friends, and sometimes family, is so difficult I often find myself happiest being alone. It's also hard to start new relationships because, even though I love meeting new people and friends, there's always that fear that they won't keep up with you and your disease because it's so up and down. I just find great support in my family because they have seen me go through it all, and my close circle of friends that still might not understand, but have stuck around regardless. It's most important to surround your life with a positive crowd and to not feel guilt with cutting negative people out of it!

Anonymous said...

One of the earlier comments here asks, "have you ever thought about it from your friends point of view." I certainly have. I do try and not bring up my illness unless asked, or unless it comes up among other subjects, but even then it's they don't wanna hear it. They are healthy and we are just bringing them down. And honestly, if you can't tolerate hearing about your friends health problems AT ALL then you are a pretty shallow person who obviously only wants friends for shallow things. I have recently cut 99% of my friends from my life because I was just tired of the constant accusations and misjudgements. None of them believe I cannot work in daycares anymore because of my illness, none of them believe my condition, and yet they all have near perfect health. So who are they to judge? These people get sick once every couple years and look down on me, who is struggling to make a go of it with multiple chronic health issues. I get diagnosed with a new chronic disease almost annually and they sit in judgement of me. I can understand that it puts a divide between us. I understand that they might not know what to say or how to help and might feel akward. I get that health issues are not "fun" things to talk about.......but, we are adults now and sometimes we need to discuss unpleasant things with those important to us. If you only want friends for talking about the latest dance and trip to the movies, maybe you should go back to gradeschool. I too now find myself happiest being alone. I truly, honestly don't care about finding new friends at the moment because chances are they won't "get it" either. Maybe that makes me horribly bitter, but after what I have just gone through with the friends I had before I got sick, I don't care......the lesson here is, if you are a true friend, you will support your friends through the good times and bad. You won't push them to be something they aren't either. This board is such a great medium to vent!

Anonymous said...

My best friend was diagnosed with a chronic illness not long ago, and I sense her bitterness and see our friendship failing. That is how I found this blog. Trying to make sense of it all, because it's not only the sick who grieve.

I read all of the posts and while I could not possibly understand what it is like, I do understand that people change. Not all changes are wanted and the loss of being able to be who you once were is probably pretty tough.

As someone who is trying to hang on to a friendship that means so much to me, I also wonder if it wouldnt be best for me to fade away. The things I enjoy in life, she is no longer able to do on any level. I feel as though she resents me with statements such as ..well at least you still have your one has been there to do x, y or z for me. Not for lack of willing participants, but because of the 'Im fine' role repeatedly, as if she feels the need to prove that no one is there for her by pushing people away. If you say your fine, Im going to believe it. Why pretend and then punish people when no one shows up on a bad day that you hide so well? YOUR FRIENDS ALREADY KNOW YOU ARE SICK...and while we may not understand the pain and anguish you are going through, we too are going through our own. It cant be all about you, sick or not. Balance is a MUST!

Im not going to be made to feel guilty for still having my life which does not always coincide timewise with her needs. I have children to care for too, we all have our own priorities.

That is where I think it gets tricky. My life wasnt turned upside down by illness. My life continues to grow and go on. My love for her is real, but there is only so much one person can take before we walk or risk getting thought of negatively or being called toxic by people who can't understand US anymore, because we arent sick.

Two sides to every story and I will continue to pray for her, but it may be from a distance.

Anonymous said...

You found out "not long ago"? Your life continues to "grow and go on"? Sounds like this "friendship" was based on what she could do for you. She can't do that anymore so you want to "fade away"?
Your friend will grow and she will go on. She will learn a lot of new things from new friends, and she will realize that your friendship was not real, it was based on what she could do for you. She can't do that anymore, so she needs to move on, and find friends who will value her for herself, not just for what she can "do" for you.

Anonymous said...

I happen to have a chronic mental illness, bipolar, which thankfully, is in remission right now. But, an especially close friend for close to 40 years has gradually pulled away, not having the courage to tell me, but the signs are all there.

Over the Christmas holiday, I shouted at a sibling for some unkind comments, and felt very remorseful about it. Needless to say I'm in a vulnerable place right now, redoubling my efforts to keep my disorder at bay. Unfortunately my parent, who was present and who said sibling lives with, has started to refuse responding to my e-mails. Things seemed to stabilize when I left: I forgave my sibling and the parent in question acted as usual, until the e-mails. Now its seemingly a waiting game, and, save a few close friends at work, and two outside of work, I am pretty much alone.

Anonymous said...

Be a real friend and get over your self!!!

Julia Oleinik said...

I think I need to interject a reminder here: this is a safe place. Comments are to be dealt with respectfully and with understanding and support. If I see more comments that are confrontational in nature, I will not allow further comment activity. Be nice, everyone!

Anonymous said...

I have experienced much of what has been said here. I have also been hurt by comments from people who tell me about their other friends with really "awful" illnesses like fibromyalgia. I have fibromyalgia along with Sjogrens and several other AI's. Obviously someone wasn't listening. My family wasn't supportive. My husband is fabulous. Two years after my diagnosis he was dx'd with RA so he gets it.

Anonymous said...

Having left a decades long and very successful career as well as an active social life for one of living with a parent and working odd jobs to make ends meet each month, this is not a path I could ever have imagined for myself or my life. To be 'asked' by illness, to give up your home, your independence, your self identity, your ability to self actualize your life, your career, sense of self worth, most all of your friends, the hope for a life partner, security, peace, your dreams of the future, your sense of wellbeing to move in with a parent and live on a fraction of what you used to earn is a lot to try to wrap your head around. My life and my home have been boxed up and in storage for over 5 years and I am just now arriving at the place of quiet acceptance of what IS. I have been working with therapists most of this time and still have not been able to let go of my previous life up to this point but I can feel it is time now to start letting go. I will be dumping the storage unit shortly but it has taken 5 long years of hoping against the odds that things might just turn around. After all, I have always been the 'eternal optimist' and have never been one to just give in to a doctor's diagnosis or the odds stacked against me from someone else's perspective. I have been the one who fought and WON the battles that were in the way of my dreams - not given in to them. That is, until now. I have begun to see that my inability to let go of the old life is holding me back from living this new life going forward. I have also had a very tough time letting go of friends that have been a large part of my life up until the illnesses began to take the heavy toll listed above. I have been the one who kept things going, friends going, events going, etc. Over the past few years I have begun to adapt to a new way of being in the world - one I don't necessarily like, nor seem to have the capacity to change for now. So, it seems like the best thing to do here is to just get on board and stop fighting what IS. This includes working to keep longstanding friends comfortable at the cost of my own health and well being. I have been overly concerned with their needs and not wanting to talk about anything that could be considered 'negative' - after all - from their standpoint - the illnesses are all in my head. I know of this teaching and also know of the consequences associated with it....the thought process that we bring about our illnesses with the thoughts we think and that I just need to think positive thoughts and these illnesses will go away. After many years (10) at this I have come to the conclusion that I don't need the extra work of trying to keep these 'friends' happy with me or in agreement, on top of what's already on my plate and what I've been working so hard to accept and adapt to going forward. I'm sad to lose the friends I thought would be there through thick and thin but I am choosing to look forward and not backward in this moment In love and light - be well.