Hi everyone - I am curious to see what kind of answers will be on this discussion. Before my Fibro, which was 30 years ago, I had lots friends. When I got sick, some of the so-called friends kept pushing me to go out with them. When I DID go out with them, I couldn't keep up with them and would always fall behind because of pain in my hips. Also I tire easily and would sometimes have to go home to rest.I got remarks like: ""Are you sick again???"" or ''How can you be well one day and be limping and in pain the very next day??''' They were pretty skeptical about my illness. I chose to let go of these people. It was a hard thing to do, because I was so close to some of them - or so I thought. I didn't want them feeling sorry for me, I just wanted them to understand and be patient with me. Didn't happen. So, I made the difficult choice of letting go of some of them. I am glad I did though. I have wonderful friends now and also on this website. Hugs!! Laurie
Yup,
No friends, unless you count online ones. Barely see relatives....unless online....again! I haven't seen my own niece since she was a baby and she's 2 now! I only see her in FB pics. I miss her and I've never officially met her! Its sad. Unfortunately my sister lives 2 hours away so its a hike to drive to visit. On top of that she owns 4 cats and my hubby is allergic to cats. He also has a brain injury and can't drive that long....so I have to drive alone to visit. I will figure it out I guess. But it sure is lonely isn't it?
Yes, I have. I’ve never had many friends, due to being… special. I’ve always been one of a kind, and not necessarily in the good way. I had four really good friends, of which one is left now. One of them died in her mid-20ies of unknown causes (suspected brain bleeding), from there, things just went downhill.
Another friend fell into a severe case of depression and refused our help and proper medical/therapeutical treatment, so at some point, I was the one to cut the connection, because I couldn’t stand watching while she’s commiting passive suicide (I felt bad for a long while, but now I know it’s just what I had to do to protect myself from the pain and frustration of wanting to help when my help isn’t wanted)
and the third friend and I got into a fight about a year and a few months back, because she called me self-centered and how dissappointed she was in me for various reasons. She’s right, but most things were due to me being forgetful and excited about my own things. It wasn’t something I did out of spite or something.
It’s really hard when you lose your best friends you’ve had for over 8 years to something like that, but…
I told myself that I’ll get my past sorted out and to tie loose ends this year. The fibro has started really affecting me and I want to clean my psyche up as much as I can so I have all my energy for the future and not spend it crying over the past.
XD I’m rather sure this will be one hell of a project for myself, but I don’t want to be lonely AND miss people I’ll never be close to again, anyway.
As a general goal for the next few years, I want to find a partner.
Yes, I’m optimistic like that.
Hi Blueeyes - My grandmother, Carrie, told me something when I was 17 years old. She said, ''When you get to be my age, unfortunately you start losing friends - either they have passed away or you truly know who your friends are in the way they treat you. If you can have 3 close friends in your lifetime, they are the gems you want to keep!'' Of course I was so young then to really understand what she was saying. But, now that I am much older, it really is true! I have tears in my eyes, thinking about what my grandmother said. She was such a wonderful and very wise woman. It's sad - isn't it?? Real friends stick by you no matter what. I am so sorry some of your family members don't understand. I usually tell people to walk in my shoes for 1 week, with severe pain and horrible headaches and then you can tell me how you felt! It was so sad to me that the friends that I lost, I thought I was really close to and vice versa. For me - what hurts the most is when family won't listen to what I have to say and they won't be patient with me. So, I made the decision to let go of these people and just move forward. I do have 4 close friends that I go out with when I am feeling well. One of them I have known since high school (that's a lot of years!!) and the three other I've known for about 20 years. We are all there for each other, as you and I are here for the people on this website. Without support, I imagine I would be just miserable, you know? Take care of yourself blueeyes - and know that you have a lot of people, including me, that are really here for you to give you the support that we all need. BIG (gentle) Hugs!! Laurie
I can honestly say that I was lucky that most of my friends and family never doubted that I was sick. But I did go out to dinner after work with them at least few times per month. I did out door things like river rafting since one friend had been guide for he brother's business. Concerts and plays...all of this was with understanding i might have to cancel at last minute and all were understanding.
IF anything many have said they had no idea how much i suffered while working etc until they changed jobs and worked as counselor to Rheum Doctors or had others they met with same chronic diseases...or got sick themselves.
My family was all great except my older sister but she is only one that never saw me really sick either. I think she has a lot of issues period. I try to not take her stuff on me as my stuff anymore...it use to hurt m feelings.
BUT...we did move a good 4 hours from most of my friends and that did a great damage to many of my friendships. Worse was my very bf had moved half country away from me so her children could experience Grandparents. I use to fly about 3 times per year to visit with her...once i moved up here, my health went down hill and i did not fly again.
I also had not only bad health but personal trauma in my life once up here. I guess it caused what most people would call a break down. I was over drugged by doctor that first saw me so became zombie on drugs. So i stopped communicating with all my friends..part out of drugs and part i felt such great shame and was lost. My so called bf never once called me and after over year wrote me a Dear Jane letter and that we changed too much so best to part our friendship. That broke my heart and my marriage was already in shambles.
Good news is some of my friends stuck with me and my husband never divorced me just so i have decent health care. I have made friends up here but sadly they all have moved away. It just seems to be that kind of place where people live a few years than move one.
Now my husband at times...since he now has arthritis in his ankles,severely, seems to be in competition who is sicker. Which i just won't play. I think he at times feels i do not think he is as sick as he is....which is not true. I get upset because he does not try half as much as i have to fight being sick...take good care of your self. Walk daily etc.
But he has depression and having had just a taste of severe depression, i get it now that he has constant monkey on his back that is incredibly hard to win battles with.
All my doctors, even ones up here that i do not think are that great have not doubted about that I am sick. I have had one a surgeon say he does not believe Fibro is real ...i got that with lupus when i was first diagnosed since it was completely unknown back than..so i said to surgeon take it up with dr so and so who diagnosed me. I really don't care what you believe.
So i do miss all my friends but email, Skype etc does help. But no, i been lucky that people have not doubted about if i was really sick or not. I did once get very sick at work...so if anyone did doubt it that shut them up. Company Doctor was in panic and wanted me to to hospital...my first lupus doctor he intern under..and told me he was in safe place where he could hurt many people. In other words he was horrible doctor and he was. I told him no it just is what happens when i push myself too hard.
so after that day at work...pretty much everyone believed how sick i got.. though in any large work place...you always have some idiot people. I never respected them so did not matter what they said.
i guess only one...is maybe my older sister...she acts like she cares but i know she gets upset about my mom saying how she is worried about me and my health..my mom at 85 can do more daily than i can! She is amazing...her triple by pass she took one Vicodin than just Motrin for pain. I do believe that motrin often does work even better than vicodin but still...she could have taken both and most people would have but not her.
I hope people who are surrounded by people who do not believe them dump them and find true friends. They are out there and those that do not are not worth time. But I also know how isolating it can be to not close friends...i do miss them not being near so much!
Hi Wendy - I appreciate you responding to my question, Yes, it can be lonely, especially when we are sick and in pain. My daughter and her son, Hunter, I see very rarely. She and I have never really gotten along and on top of this, she has very little patience for my illness. What's so amazing about this, is the fact that she is a Vet technician!!!! Meaning - she takes care of animals. She adores animals and her heart goes out to them when they are injured or sick. But when it comes to me - she gets rude and impatient. But I let go of a lot of others over the years because of my illness. They were rude, abrupt, and absolutely had no patience with me whatsoever. It was kind of hard at first to let go, because we had all been friends for so many years. But I got smart and realized I really didn't need them in my life anymore. Please stay with this website, Wendy!! Mentally this site has done so much for me in giving me hope and letting me make new friends who really know what I go through. Thankfully, my son, Jason is wonderful to me, always had been. He's getting married in September and I have something to look forward to, instead of thinking about my illness all the time! Take care of yourself, Wendy. It was so nice to meet you! Laurie
Great topic, Laurie! I had a good friend from work make a comment via a text after I had to cancel an invite for the second weekend in a row - “It must be hard to make and keep plans.” Oh how true this is! I always respond when I have to cancel, “Please keep asking me because I know they’ll be days where I’m good to go.” And I will call them on good days and invite them to do things to let them know I’m still able to on good days. I know they must get tired of us canceling, but I let them know that I have no control some days of how I will feel when I wake up. It does help to educate them if they are willing to listen so that they understand what it’s like. Ever since I have “enlightened” a few about FMS at work, those who now know what it’s like are more supportive, willing to invest time finding out more about FMS and are very compassionate when I look and feel like crap. My boss is probably the most compassionate and understanding and has gone out of his way to educate himself on FMS because he said it has helped him know what I am going through. Best boss ever! Like he said - education becomes knowledge of the unknown. I believe it’s up to us to let them know why we can’t do something instead of just canceling.
I have 5 very good friends from high school that get together a few times a year and we always just pick up where we left off. We are all so different and have been through cancer, divorces, deaths, births, etc. and I have had to cancel attending dinners, etc. We go up north for 5 days together every June, so they see me when I wake up and need to lay down, or can’t do something. That seems to help them understand. I don’t want sympathy, I just want their friendship and they know that! There are many days where I would rather be by myself, wrapped in my heated blanket with just my dog and my bed. On those days, I’m my best company!
Hi Dwaggie - You are being so smart!! It looks like you are doing everything possible to help yourself and this is definitely the right thing to do. I get forgetful too, and my son gently teases me about it - which doesn't bother me. He's been so wonderful to me and I appreciate it so much! Getting sick with Fibro does cause us to reflect, and maybe 'clean up' a few things in our lives. Sometimes the reflections are hard to admit to. I have grown up quite a bit since I got the Fibro 30 years ago. I certainly don't take things for granted anymore either. When I DO have a good day (which is very rare) I just try to enjoy it as much as I can, because the next day, I can be miserable with pain. Sometimes, for me, the Fibro comes on so quickly and it will disappear just as quickly. I always have pain, but I am talking about a flare-up. No Fun. Thanks so much for your insight on this, about losing friends. I hope you stay with the website, as I have told other members how grateful I am to talk to people like you, who know what we go through! Hugs!! Laurie
Hi siskiya - I agree, it is isolating to not have anyone you can be close to and understand what you are going through. True friends (as you say) do not abandon you when things go wrong - especially physically. I think some of us always get stuck with a horrible doctor once in a while. When I first got Fibro (30 years ago), my rheumatologist wasn't sympathetic at all in what I was going through. I was very frightened at that time because I had never been sick and my hips were just SO sore. I could barely walk. He spent about 10 minutes with me and then gave me a prescription for pain. That was it!! Well, I was smart enough to know that I can't live off of pain medications all the time. I finally found the right doctor and he put me on an anti-inflammatory med. It wasn't till several years later that I was correctly diagnosed with Fibromyalgia. But I had other things going on as well that needed to be taken care of. Fibro, I think, was unheard 30 years ago. I am so sorry about your sister not taking you seriously. Family, especially, can be so frustrating when you can't get across to them what you are going through! I have been through this, and it's so annoying!! (smile). I agree with you in the fact that, those people who just don't have the patience to understand what you go through, are better off being left behind. Have a goods day and take care of yourself?? Laurie
Hi Sandi - I am so glad that the people, including your boss, understand what you go through. You are so lucky that you are surrounded by positive people that support you at work. That's so rare! I agree with you that it IS up to us to let people know what's going on instead of cancelling. For a long time, at work, I was perceived as a 'snob' because I couldn't join in all the fun of going out with the other employees for a drink, a party or maybe to the movies. Believe me - you don't want to be around when I am in pain! I don't get nasty or anything, it's just that I need to take care of myself and be alone. I am envious that you have your beautiful dog to stay with you!! I grew up with dogs, but later on, when I moved here, I got a cat - a siamese. She was just adorable and did the cutest things to get my attention. She passed away about 3 years ago from a seizure. My son, Jason has been trying to talk me into getting a little dog - which I would love. But it have to take into consideration the idea of walking the dog every day and so on. I have an apartment - so it would be a little difficult, especially on those days when I can't move at all. But I AM tempted!! LOL Sandi, thanks so much for giving me feedback, I really appreciate it, Try to have a painless day!! (easier said, then done!!) HUGE hug!! Laurie
It has never been easy for me to make friends to start with. Now I have no friends. Very few people will even talk to in real life. I am very awkward and weird. My husband's friends don't even come over when I am around because I make them uncomfortable. He lies and tell me that they don't want to bother me and the boys. I have come to be ok with being friendless. No need to say "we" our your friends here.
Hi Laurie,
I'm sorry for you and others who've lost friends due to fibro. It's a shame that illness can tear people apart from one another. But you have to wonder about those people who leave you due to it and how they'll respond if their spouses ever become seriously ill. Will they dump them too? Illness is a tough thing to negotiate friendships and marriages around.
On the other hand, I do understand how people could not understand fibro. It's like walking along on a sidewalk and suddenly falling down an open manhole and breaking a leg when you hit the bottom. You are trapped in a dark, dank, deep, scary hole that you can't escape from. While you suffer down there in pain, trying in vain to get out, people up above are still happily walking along, avoiding the manhole. How can you describe it to them? You just can't. And if they can't see it or feel it, they aren't interested in knowing more about it.
Yes Laurie....I recently have lost my fiancee due to a flare up. We would be perfect until I was sick. He was not compassionate at all and didn't believe that I was sick. He even left me at the ER once when I was having bad vertigo spells. They diagnosed me with vertigo and referred me to a neurologist, I had to WALK home. When I got home and I told him what the dr said, he just said they would tell me anything to get me out of their hair!! We broke up and he moved out. I have lost a few friends that wouldn't understand also. It is a lonely condition. Hugs to you!
Wow Petunia girl - you should be writing books!! lol You describe things so well! I never thought of the fact that if my friends can't be around me, how would they treat their own family if hit by an illness. Interesting. I'm glad you brought this up. There used to be an old saying and I don't know if this would pertain in today's society, but I used to hear people say, ''The way a man treats his mother, is the way he will treat his wife.'' I find this to be SO true, especially when relating to my ex-husband. He was very nasty to his mother and she was such a sweetheart! So what do I do??? I marry the idiot!!! LOL I needed a good thump on the head at that time, to straighten me out and look for someone FAR better then him. But what do you do??? When you are young and in love, apparently it 'blinds' you to everything else going on around you. I am perfectly happy to be where I am now, with the exception of having the Fibro, of course. My father, who was a doctor, didn't like my ex-husband, because he thought he was after my money?? Well, guess what?? Dad was right! Father DOES know best! (Smile). Like I mentioned before to everyone, I was extremely healthy and active when I got married and by the time I got rid of that awful man I was underweight, had high blood pressure, tremors in my hands, and finally Arthritis and Fibro. So I went into it healthy and went out, really sick! Whatever ailment I developed in my marriage, is still with me to this day. I have to take full responsibility for this, as I chose to stay with him for so long, rather than leaving him lot sooner. Part of the reason I stayed, is he made ridiculous threats to me and he did have a temper, something I never saw until we were married. He was on his best behavior when we were dating though. To be honest?? I will take having Fibromyalgia any day, as opposed to being married to my ex-husband. As I get older, I am making new friends along the way and this is a real plus for me, especially being on this website. Thanks for responding Petunia girl! You always say just the right things and it makes my day!!
HI Christina - it makes me very angry when I hear about spouses leaving there loved ones because of an illness. He wasn't really a man - was he! I have had Vertigo for about 30 years. It happened just a short time after I was diagnosed with Fibro. I can always tell when I am getting it because I start to feel sick to my stomache and awful noises in my right ear (Tinnitis)_ that drives me crazy! There's nothing much you can do about it either. I got Vertigo last night and still have it today. It feels like someone is literally screaming into my ear. Annoying!! It's so loud that sometimes I can't even hear my phone ringing. I agree with you, it can be a lonely condition for us. But, for me, this website has been godsend to me. To talk to so many other people who have my condition, is just amazing to me. I am so sorry about your break-up - but he's the loser, NOT you!! Keep in touch? Hugs!! Laurie
No offense, Christina, but when you lost your fiance, you lost someone else's headache. In other words, he'll be making some other poor woman unhappy now, not you.
I guess that being sick really does bring out the truth in people, as to whether they'll be good to your or not. I had a friend do the EXACT same thing to me once when I had kidney stones and had to go to a hospital that was some distance away. He brought me there and then left me. Like you, I had no way to get to my car (which was quite a distance away,) other than walking. With the painful kidney stones I still had.
So, since I HAVE been in your shoes, I feel quite confident in telling you that you lost NOTHING when you lost your finance. I wouldn't do that to my own DOG let alone a friend or fiance. To allow you to walk home while you were suffering from bad vertigo is inexcusable and, in my humble opinion, unmanly and not gallant.
The time you spend BEFORE you're married is supposed to be the happiest time of your life. If your fiance treated you like this BEFORE you were married, try to imagine how much worse it would be once you WERE married.
Okay, enough of my opinion. I believe that you ladies (and others) are better off without people in your life who treat you poorly because you're ill. Remember ladies, we're SICK, not CRIMINALS.
Love,
Petunia
Laurie, I’ve had a lot of long term acquaintances over the years, colleagues, people I went out with , but very few friends. From my perspective the people who are true friends are the ones who are there, who you know will help you out in a bind and they know you will be there for them if they need it. Do they understand FMS, not really, but they keep in touch, and we don’t go out often, but we make plans, and if I can’t make it, they’re ok with it. My family is the same. Similiar to Petunia girl I understand why they don’t understand, I’d never heard of FMS before I was diagnosed with it, even one of my GP’s didn’t believe that FMS existed, so I waited 8 years, thinking it must all be in my head.
I tend to keep things to myself, so I don’t talk about FMS much, my husband is usually supportive, sometimes gets irritated, as does one friend I’ve had for over 40 yrs, but it doesn’t last long. Part of the problem I think is that they can’t really help us, other than do their best to support us through this.
It’s difficult for people to understand Chronic diseases/syndromes that aren’t very visible.
As my mother always said, when she was upset with one of us, “You can’t choose your family, but you can choose your friends”. You made a difficult choice, but it sounds like you made one that made you happy.
Hugs , Barb
Hi,
I am with Petunia on the description of the black hole that you find yourself in. In the beginning I had hoped to find sympathy and understanding from others but I encountered skeptism with both family and friends. My mother had back problems and arthritis so she has always been very kind and compassionate. She is always willing to listen to me. I feel very fortunate that I have that. My biggest loss was my divorce from my husband. He was understanding for so many years but in the end he accused me of using it as an excuse not to work. I really was perplexed. He listed times I had been out of work prior to my car accident and thought I was malingering when I took two moths off for back problems. I was simply exaggerating about severe pain in my thumbs. I could not bear the fact this person just up and decided one day to turn on me and accuse me of lying. I did not want to spend another day wondering if I was going to be interrogated. In the end after several years of attempting to work full time hours and failing I I finally succeded. I was divorced by then. It was a great loss because we had been together for 12 years.
Great post Laurie!
This is always an important topic here, because friends and family are our worst critics. Either they don't understand, or they just don't care. Having to deal with these people can wear us down and make us question ourselves. Besides wanting to get rid of these negative people, we also have chronic pain that leads to depression, and depression leads to pulling away from society. So many of us have isolated ourselves, preferring to communicate online with those that understand instead.
I was never a social-butterfly with a lot of friends, I had just a few that were those "lifetime friends"... or so I thought. As I developed more and more FMS problems, I found out who my real friends were, and dumped the others. One that I kicked to the curb was my best friend for 28 years, and she even worked for the Rheumatologist with me, so she should have understood! But working there, she developed the attitude that all FMS patients were liars and complainers, and added me to that list.
With family, I have one cousin who has multiple medical problems, along with FMS, and she understands. Otherwise, there isn't anyone that takes me seriously. A large part of the family is friends with a woman who has FMS, and they are extremely sympathetic toward her, but they don't cut me any slack. Hypocrites. I guess because I'm family, they feel they are allowed to abuse me.
I've learned to be absolutely fine without them. I ignore the snide comments, and to hide my symptoms. In the long run, it's just easier that way. I've made myself a new family with mostly online friends of MY choosing, and I'm so much happier!
Hugs!
Renie❤
Hi Petunia - You took the words right out of my mouth - saying that being sick really brings out the truth in people. I have gone through this, and it really hurts for a while. But I always move on, eventually. Also, now that I have joined the group, I DO fell so much better. It is SO nice when someone requests me to be their friend. It makes me feel really close to all of you! Hugs! Laurie