Losing a friendship to GBS

Birdie,

I’m so sorry about your loss. Some people just can’t seem so relate to an experience they haven’t had personally. I hope you will continue to make new friends – the kind who can accept you as you are. Don’t forget how much you have to offer.

Suzanne

My 10 year old son has cidp and his friends have been GREAT. It is my best friend that has been letting me down. We have children the same age and when I am sad or depressed and call her, she yells at me and tells me to deal with it! Mind you I have only had two meltdowns with her. On the other hand she has daily meltdowns regarding her daughters social schedule and girl conflicts. Lets see, who should deal with it? Anyway, I am learning that your best friends are not always who you think they are when the world is not perfect. It seems that certain people need others to fix their problems but when they are called on to help you, forget it. Honestly, I think this web site is a great outlet for support and streghnth from people who really understand the problem and the order of importance in life. We just made a connection!Thanks,Dawn Kevies mom

Birdie.
We find that when we get sick there are those that are suppose to be our friends are what is called conditional friends. A true unconditional friend is one that brings love and compassion and understanding to you. Your other friend is not thinking of your sickness nor compassion or loveing. We find out who is a real friend and the others that are users.
You do not need to be brought down or laughed at or treated the way she is treating you. She is carrying anger because you now cannot be as you were.
You need love and understanding and not put down. This person if it was myself would be told that if she cannot be understanding and compassiant then please leave me alone. Trust me I have been there. You have loveing friends and let them be with you. The other woman has really never been what I would call a friend. Let her go and let her know you will no longer allow her to upset you. and then within yourself pray for good and happy things for her and let her go.

Hi Birdie,

Frank and I lost alot of friends because they couldn’t understand what he was going through. But I have said this on another thread, they aren’t true friends to begin with, because if they were true, loyal, loving friends they never would put you through hell. They don’t get the hell that a GBSER or CIDPER goes through and you don’t need their toxic crap.

You know what. I think you should say “screw you” to her & call it a day. If she can’t TRY to understand what you are going through then she isn’t a friend at all.

It’s during the rough times in life that you truly learn who your friends are.

Kelly

A dear friend of mine lacked true compassion as she had never experienced disease, just the occasional cold/flu. This past winter, while going thru chemo for ovarian cancer, over and over again she has said “I am so sorry; I just didn’t get it. I had no frame of reference”. Never did I ever think I would hear those words from her! I would never wish cancer or a disease on anyone but it is amazing how a personal experience can change a person. Now, when she needs a compassionate ear, she knows that “I get it”.

As others have said, and I’m paraphrasing, “toxic friends do not help us but drain healing energy from us when we need it most”. I would say to carefully think thru the relationship and if there are no positives to out-weigh the negatives, then say good-bye and wish them well, with sincerity.

Judi, you always have such good advice, and you honestly say it in such a wonderful way! Thank you for everything you contribute.:)

Birdie, It is going to be hard some days thinking about the loss of that friend (and you may even second guess yourself – I know how I am sometimes), but I really do think that you have chosen to do the right thing as I feel your health was suffering more so because of her.

I have to say, once Frank and I gave up “toxic friends” our lives were so much better off without them and those same friends never have called us in the 6 years that Frank was sick. So giving them up was very easy for both of us.

I have my “Circle of Friends” that stood by us through thick and thin, those are the ones I would do anything for. I love them dearly.

Someone passed this website along to me. It is the absolute best that I have found to help people understand what it’s like to have a chronic/debilitating disease/disorder.

Please feel free to share!

[url]http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php[/url]

With regards,
katie jo

When my GBS hit its peak, my friend told me that she was the worst friend in the world and she couldn’t help me NOW. (She lived 5 minutes away.) I had another best friend who stopped by every other week for a few hours to get groceries. She had a dream at the beginning of my illness that we would not be friends when it was over because she did not help me enough. Well, she got her wish. She left me high and dry six weeks ago – knowing that I was alone and needed food. My garbage piled up in the kitchen. She was a “friend” for 30 years and I trusted her implicitly. Had her as my beneficiary. So every one of my friends is gone. Luckily I have a counselor in Tampa that keeps me sane. I thought it was something I had done or not done. He told me that these so-called friends were damaged people.

So be grateful that you found out early. I am sorry that I wasted thirty years on these people. My only relative did nothing. I live alone and it is tough. People drive past the house and call my brother and tell him the snow in the driveway isn’t shoveled and the garbage can is on its side for a month. They knew I couldn’t walk!!! What idiots. How long would it have taken for them to pick up the garbage can??? I think I should start a business called RENT a FRIEND. My father used to say that your best friend is the dollar in your pocket. I never knew what he meant till now. I am not negative – just disappointed and lonely. How do you find friends? I am no longer as trusting as I used to be. WHere is the compassion in people. THose of you that have friends that stuck by you – count your blessings.

GBS Sept. 06 – present

The “Spoon story” is truely a great tool for explaining chronic illness. My hubby and I used it just this very morning. Thank you for sharing! And yes, it is important to be grateful for and express it to those family and friends who have stayed by 🙂

Ever since high school, it seems as though I had many “close friends” but no best friends. Well, I would call some of my friends best friends at different times, but I knew that they really weren’t. I think the problem comes in when one doesn’t make the quick recovery, as in some illnesses; or they don’t understand what the illness is at all, such as in the case with GBS or CIDP.

Cancer: one gets chemo and/or radiation & either you live or you die. Plain & simple. But with illnesses where one gets ill, then takes a very long time to get better, but never well, it is just too hard to comprehend. Or maybe they do actually understand, but are afraid of having to help someone out indefinitely? I got so many flower arrangements & so many get well cards for the first year that it was unreal. I was too sick then to even care. They even took a collection up at work for teachers to sign up to make meals once I got home, or to donate to a fund for take-out. Our old church sent generous collections twice. These things I remember very well, & we sent nice thank you notes.

But as time goes on & we don’t get better, it is usually pretty much up to the family to pick up the slack of the ill person. And fortunately, I had the kind of family who could do that. I really feel for those of you who are trying to face this all alone. Ironically, I still am friends with the same people, although it is usually in the form of chatting on the phone more, rather than seeing them in person. I am careful not to talk about my illness, as they want things to be the way they were. That is fine with me, I guess no one wants to listen to other people’s problems.

I often wonder how I would be if the same thing had happened to one of my friends, & I have to admit probably not all that much different. At the time I got sick, I had two left in college, was teaching full-time, had a 4 story house to clean, had to cook a decent dinner every night, do all of the wash, etc. I remember being very tired myself in the evenings at age 48, & I was well then. Maybe we should really think about how we would all react if this happened to someone who was a close friend, but not a best friend.

I have met a whole new circle of friends from being in the same water aerobics class for two years now. We visit before & after class in the locker room & the hot tub, & a bunch of us go out to coffee after class. In a way I like that they never knew me before my illness, as the expectations are less (I don’t have to be the funny person with so much energy all of the time.) At other times I wish they could see the “old Me” just for one day, & see that I used to have a body I was so proud of (so athletic), a walk I loved, energy to burn, etc. But that will never be, & that is OK too. They seem to like me & accept me just fine anyways…

i lost a very good friend when i was going through my i.v.i.g. and chemo. treatments. i had a friend of over 35 years. we didn’t live close, but we spoke on the phone all the time and visited eachother as often as possible. when i knew she was coming to visit me in the height of my treatment, i warned her that i may not be the same person physically, but i’m ‘STILL ME” inside. well, when she saw me, she got very quiet and now, almost 5 1/2 years later, she won’t take my calls or have anything to do with me. i guess that’s the true definition of a “toxic friend”. unfortunately, they do exist.
stay well,
deb

Deb,
My counselor told me that some people that drop us do so in fear. They do not want to see us like that because it allows them to experience their own mortality.

Pam,
I also am a teacher.My principal told the faculty that I was depressed! No cards..no flowers…..no mention of what I really had.

It is so sad to read about conditional friends. They are happy as long as everything is going their way. When they are sick they want everyone to do the poor you act. BUT let us get sick and all we want is to have a true unconditional friend to talk too to help make me feel better mentally and where are they GONE. As I said these are what I call users. They will take and take but to give. OH NO. Remember no matter how deepley it hurts they will in their life see how it feels to be rejected.
When I hear someone say I have so many friends. If they only knew. If they have 1 that will support them and help they have a blessing.
A true friend is unconditional and will be with you through good and bad.I have 4 friends that are unconditional and they have been with me since I went into the hospital. I say a prayer for good and happy things for friends that are users. Yes I want to say more but refuse to bring myself down to their leval. I say to someone that is a user (I thought you were my true friend. Now I know. May gods blessing be with you Good bye)Do not answer their calls and cut them totally.
I pray for strength and good things for you. The people here are true friends as we all have suffered one way or another. (Steve)

It has been sad for me to lose friends, however the friends that I have made through the foundation more then make up for those I lost. I look at it as their loss not mine.

[B][COLOR=”SeaGreen”]I have found that even one’s inner circle, close family, spouse, children, can not comprehend what you are going through.

Because the recovery time is so protracted, people move on and refuse to think of you as struggling with your ailment. They lose patience with you because you are no longer like them.

I love the post from Judi Z. in that it takes a similar experience from those close to you to understand what you are truly going through.[/COLOR][/B]

I do not have many friends. The closest ones cannot fully understand what I am going through, however they are at least willing to make the effort to try. I find it most difficult that my life is so totally different from the lives my friends have. I usually do not have very much to talk about when I’m on the phone with someone, other than having been on a BIG trip to the groceries.:D

A while ago I talked about this with a friend of mine. I said that for me the highlight of the day was that I managed to cook something really nice for myself, but I didn’t think people were interested in what I ate. He said: “Oh, but I’d love to talk about that! I had a really nice casserole for dinner, what did you have?” Now, even though he lives in Sweden and I haven’t seen him for more than a year, I consider him to be one of my closest friends.:)

Like all of you I also lost friends because of GBS. Just this week I got an e-mail from someone I knew for a very long time. He liked me as long as I went along with his way of thinking and as long as I admired his way of living. He believed he had the gift to see my future and his plans for me included mainly things I cannot possibly do, even if I wanted to. It was bad enough that he didn’t want to hear I had other things in mind, but on top of that he just ignored my grief over losing the things I did want to do and couldn’t because of my handicap.

When I had to move closer to my family and leave my old life behind I was so happy to eventually find a new place to live. I was so proud of my new house, but all he could say was: “So, when are you going to move, because this house is too small to have an art studio, unless you are planning to extend your attic”.:eek:

Since that moment I ignored his e-mails, also because he never asked how I was, but just ordered me to respond. This thread has given me the courage to write him an e-mail and tell him I didn’t want to see him any more. I wished him well like Judi advised and don’t intend to respond to his e-mails, if he sends any at all.

I guess he wasn’t a friend to me anyway, with or without my GBS, but it came to light clearer because of GBS. I think I should see that as a good thing!

I do believe folks really think my CIDP may be “catching”. They simply don’t get it. That’s the MS saying-“you don’t get MS TILL you GET MS”.
Finishing up 2 years of IVIG-a very aggressive schedule-not including the hard painful years of pre-diagnosis. My own family is in denial and I’m talking about one physician and the other a clinical therapist-before I was diagnosed they treated me terribly.
Folks see me outside and I’m a big “smiler”-so they must think she’s just fine.I hope they never have to get something like this.
I’ve had too many ‘takers’-toxic is the other description. When I asked for some assistance they acted surprised and couldn’t do it. I let go of a few supposive friendships and I felt so relieved. So glad not to have to screen my phone calls. I have had very good friends but the give/take changed and so did the relationship. We just sorta “moved on” or as I call having different roads to travel.
I do have one special friend who lives very far away and she also is ill but listens to me. After we chat I feel so wonderful-thank goodness for her.Finding new friends when you’re older is hard-for most.I cherish the ones I now have.
Enjoy the simple things like my cat-he’s one constant in my life.

I have found that even with myself I have had friends that were only my friends for what they could get or friends for their own convenience.
They were not true friends.
My son Nate has some friends that were really good friends 5 yrs before he got sick and are still his close friends now.
His buddy Arnie and his girlfriend Liz want Nate to be Arnie’s best man this coming October, whether he can walk or not. Now to me, that is a true friend.
Arnie is 100 miles away but is in contact with Nate all the time, either with e-mail or text messages or phone .
Recently Nate and his bro Ben went up and spent 2 days with Arnie, Liz, brother Manny, sister Maria, Mike and 3 kids. They were all happy to see nate and sorry to see the guys come back home.
Those are the best kinds of friends, those who are understanding and patient with your illness. They don’t put pressure on you to be how they think you should be or make comments about your lack of progress.
They like you for who you are, not what you can do.
Those are true friends.

In my experience, the most important factor is that I understand that those who have never experienced CIDP or GBS, either as a patient, caregiver or family member, really have no idea what it is about. First-hand experience is all that counts when it comes to knowing how it feels physically, how the individual feels, what they fear and their hopes for recovery. To have something as devastating as a disorder that comes, in the case of GBS, so quickly, and affects every part of you – as opposed to a gall bladder problem, say, that only affects that organ – cannot possible be comprehended by others. That means all they can do is be willing to accept what you tell about what you are going through. I worked in an “Independent Living Resource Centre (ILRC),” an organization started by people with disabilities who were tired of being told what to do by medical staff and others that thought they knew what was best. My work reinforced for me the whole idea of the validity of the individual’s story and the fact that each one is unique.

Because I had GBS, I feel lacking in knowledge about CIDP. In our support group, those with CIDP don’t come for very long and I wonder if it is because we don’t discuss it as often or in the same way when most of us dealt with GBS. As a result of this, we are starting a CIDP group in the fall so that they can benefit the way we have by sharing thoughts, solutions, frustrations and funny stories.

Have a great day! Maureen

when you get GBS or CIDP becouse then the one that cant watch you going down disapear like a wave, I found out very quicly who was going to stay my friend and I even got new friends while I have been in my rehab. But I lost also friends that I though would stand by my site through all. And that hurt alot, I got one friend when I was in the hospital and she has CIDP she found out 8 weeks after she got her first attack then they thought she had GBS. I find it good to talk to her about our health for we have not many to talk this too, here is no group of people that we can look for support from. I have been asked from nurses that are working at the rehab if I would like to work in the support field with people that have long term disesed. They say I have a attetuide that would help many people and want me to take a courses in thouse fields.
Though it is hard to lose a friend then in it is always a glimp of light in finding new friends as you can do on this board and in your next neighborhood is always some one that you dont know now but you will find one if you have the curage to go out and look.
I know this might seems silly but I have my thought of a actraction, if you want somthing and you think about it then it come to you.
xoxoxoxoxoxo
Helga

Birdie,

Sorry to hear that you lost a friend due to this horrible illness. I believe my marriage has failed because of my illness with GBS. I met the man of my dreams in 2004 and we planned to get married in October 2005. I had just quit my job of 11 years in July 2005 so I could move to where my fiance lives and start a new job and new life with him. Well, a week after quitting my job and signing for our new house, I came down with GBS, that was early August 2005. After a month in the hospital we ended up getting married in the court house early Sept 2005, for insurance purposes, since I had just quit my job and my medical insurance was getting ready to expire. This man was a wonderful caregiver, I really couldn’t have asked for anyone better to care for me. But due to the fatigue and not being able or wanting to get out of the house, he kind of got use to doing things without me and I think even resenting me some for not wanting him to get out and do things because I couldn’t and didn’t want to be alone, AT ALL. After about a year I slowly started feeling like me again and wanting to get out and do things, however it appears we have lost our connection with each other and are talking divorce already. 🙁

I really hate this illness! There’s not too many true people out there so if you have any true friends at all, that’s all that matters. One loss should be nothing to us after what we’ve been through……

Paula

This is a tough subject for us all.

Now that it has been 10 years for me, the friends that I do still have (very lucky), seem to think that I am ‘milking’ the thing I got way back when. I try very patiently to explain that I have residuals and will never be like I was. I think the only 2 people in my life that truely ever understood what I was going through and am currently, were my parents… but now they are both gone. I get into spats with my sisters as they think I should be fine. I am working on moving away emotionally from them – this is very hard to do as they are my sisters and I love them, but their attitudes are not the best for me.

This is a great subject for us all to share!

Hi there, I’ve lost one of my very best friends (prior GBS we did everything together) through my GBS or hosp admission and to this day I do not know why. She visited me twice in hospital with another good friend in the first couple of weeks and after that I never saw or heard from her again and my family never heard from her either. My other friend said they were texting each other for a while and that all stopped too. When I was disch 5 mths later I had to ring her place of work not thinking I’d get her but I did and it was the most awkward bizarre conversation. Everyone that knows us is completely shocked by her behaviour but I decided that I had bigger fish to fry and my recovery was more important than trying to figure out whether people gave a sh..t about me or not so even though I feel totally gutted by her behaviour, I’ve decided to move on because I need positive people around me not negative or ones that don’t care so I know how you feel.

Something I learned very quickly in hosp was that it definitely sorted out your true family and friends and it’s quite an eye opener. People you least expect are there for you straight away and other’s you thought would be aren’t so it’s a bag of mixed emotions when you’re the one in the hot seat that’s for sure.

Dear Birdie,
It really depresses me to say how many friends have strayed since my fatigue with GBS is so promanant. I have to work all day so I am pretty much had by the end of it. I am having a good day if I can stay on my feet til 7pm. Since most of my friends plans seem to exist until later in the evening, I find I have to bow out. Hence, they have bowed out from asking, calling ,or even asking me to do things on my days off when I possibly could. There are a few left, but like you, most of them find my fatigue all in my head and I should be fully recovered after seven years. This hurts me so badly. Why can’t people believe us? In fact, I was less fatigued at about year 4 and now it seems even worst. I don’t know if any of you have experienced this. It scares me. The pain and burning are always haunting me as I try to keep a smile on my face. If they could only walk in my shoes. Being as I am taking care of my dying mother,(they are giving her about 3 more weeks) and my hospital will probably close down, hasn’t helped. In fact, I don’t know what could help at this time. I’ve exhausted every med option, I only hope and pray for some kind of miracle to make me stronger. I know I am whining and I’m sorry. I just STILL want my old self back , and to this day, can’t seem to come to terms with this thing called GBS. I don’t think we should tell people we had GBS. I think we should tell people we HAVE GBS, because the residuals will always be a part of our lives. Thanks for letting me air. xoxoxoxoxoxoxoxo Roxie

I agree with Roxie! What’s this “I had GBS”? That indicates one “got over” something but we have these challenging residuals. . . Most often now when someone asks “what do you think is causing ____” I just respond with “my paralysis”. That usually startles them enough that they change the subject!!

Roxie ~ no apology needed. You are among friends here and you can share any emotion you want to! I am post (the event 😉 ) 12 yrs. and I still have moments of wishing for my before life but alas . . .

Paula ~ I am so sorry. I wish I had a magic wand . . . Being a spouse/caregiver is a huge job. Have you talked with any kind of a counselor, preferably one knowledgable about chronic illness? My husband and I did that when we realized that this was the “new normal”. (we were married just 2 months when . . .)

How I wish everyone “well” 🙁