Tired of Explaining Why I can't Socialize RANT

Discussion in 'Fibromyalgia Main Forum' started by TeaBisqit, Jun 29, 2009.

  1. TeaBisqit

    TeaBisqit Member

    I am so sick of constantly having to explain to people why I can't go out, why I can't travel, why I can't have a life from this disease. And even when I tell them, they just don't get it. It goes in one ear and out the other and they act like I didn't explain anything at all.

    What part of too lightheaded to stand up or sit up for about twelve hours at a time do these people not understand? What part of too much sensory input really makes me sick, don't they get? Sights, sounds, smells, lights, I can't be around much of it for very long.

    Too much physical pain, too. And how about every time I go anywhere, I pay in spades for it for days in hellish pain and fevers and weakness and a million other symptoms.

    An old family friend started on me tonight about how I should join things, meet people. How I need friends in my life. No, really??? Like I haven't thought of that in all these years of being too sick to do anything. I would be doing those things, if I could do them. I can't. I can barely go anywhere at all now. The foodstore almost killed me today. And I will be paying for that trip for days. My cognitive symptoms are worse than ever. It's not getting better. I can't be around alot of people. The sensory input is too much. I do better when I am alone. No matter how lonely that is, I'm actually better with just my cat.

    I didn't choose this for my life. It sux and I have no way out of it. This is it. Obviously, if God wanted me to be out socializing, I'd be doing it. I am simply not well enough. And I am sick of having to explain it to healthy people who have no clue.
  2. gapsych

    gapsych New Member

    I know exactly what you are saying. We did not choose to have this DD. However, with a lot of practice we can choose how we react to these people.

    I have come to the point where I let it roll off my back. What others think of me is none of my business, LOL!!

    If you have to explain over and over it just makes you on the defensive and this causes stress.

    It was hard getting to this point. How did I do it? With the help of a great therapist/nurse practitioner who works with people who have chronic diseases. She gave me tips on communicating with people, what has helped others, connected me to some social workers, let me vent. I do not see her now, but will go in for a "checkup" every once in a while.

    Now this is MUCH easier said than done and it does not mean you can never complain or talk about your illness.

    There are certainly times when an explanation is due however I have learned to express things a bit differently depending on the person. Even this does not mean people will understand, but it makes me feel better and lessens my stress.

    This board also helps. One day we may be venting and the next supporting others. I think what goes around comes around.

    You don't owe anyone an explanation and that includes yourself!! :D

    Take care and be gentle on yourself.


    I neglected to mention that doing the above does not mean I don't ever get frustrated, mad, down. We are only human.[This Message was Edited on 06/29/2009]
  3. italiano

    italiano New Member

    gap-I totally agree with that answer. Yes, having to explain makes you defensive and stressed.
    good advice.
    Tea- vent anytime. I too feel like going for groceries is a big event for the day and overwhelming. I stand in the isle thinking...this is ridiculous. I look at people jogging or biking or sitting at starbucks with friends drinking coffee and think...i miss that life.

    we are here.....and care.
  4. lynncats

    lynncats New Member

    I so agree with you. this dd jus sux, (do you know how liong it took me to type that). I am all over, "until you've walk in my shoes, you have no idea". P.S. Cats rock, i hav3 8./


  5. redgirl67

    redgirl67 New Member

    It is very frustrating to get so much free advice from those not suffering with this disease. I too am sick of people not understanding how physically and mentally 'expensive' it can be to go out and socialize. And, tired of the comments that well you look good and therefore I must be better and should get out more....if they only knew that by the time I make myself presentable I am about ready to go back to bed for the day. The other thing that really frustrates me is when people plan something and I prepare all week for the occasion by limiting my energy expenditures and then they cancel or don't follow through from their end. My energy is as precious as my spare cash...I don't take kindly to others squandering it. I hope someone understands my frustration with this. I have all this underlying anger. This is such a lonely experience and healthy people really don't get it at all.
  6. greatgran

    greatgran Member

    I sure do know where you are coming from. I am so much better off being alone and not having to go anywhere. People don't get it and they never will. If you try to explain they haven't a clue what you are saying. In fact I think most of them think its in our heads. Well, where ever it is it is a miserable life and we have to do the best we can and to heck what others think.

    I don't feel I owe and explaination to anyone and why waste my breath. I hate this DD and what it has taken from me but that gets me more depressed so I just try to accept it but it sure is hard.

    Even my husband, after seeing me this way for years, still says if I would get out and do I would feel better.. They don't realize everything we do we have to make ourselves do.

    My daughter, that I have not seen in 2 years is coming for a 3 week stay and also my granddaughter and how I want to see them but at the same time I am dreading it cause not only will she be here but all the other children, grands and great will be coming in and out.

    Of course I will be up and trying to do , knowing what it will do to me. I have tried to tell them but no one seems to get it.

    I have no answers . By the way why does this DD cause all the head stuff, the off balance, lightheaded, sights, smells and lights. The pain is bad enough but all the other weird symptoms not to mention the anxiety/depression.

    So no need to waste your breath , they will never get it.

    God Bless,
  7. ksp56

    ksp56 Member

    I think most of us have experienced this. It is awful.

    When I was first diagnosed with fibro and cfs, no one, other than my dying dad and husband even tried to understand. Our family is very close but missed this one by a long shot!

    While I am fortunate and can go out sometimes, and feel 'normal', (of course with the daily pain) I still pay heavy for it. If we go on trips I rest a lot and come home and crash..sometimes for weeks. My body becomes so fatigued and then fibro pain sets in.

    I am to start babysitting our first grandchild next Tuesday for three days a week. It scares me. I was up front with DD and told her we would see how it goes. She seems to have forgotten that, and the fact that I wanted flexibility if her dad and I wanted to do something.

    I had breast cancer at the age of 40, and had several major organs shut down and a heart attack after a back/neck surgery that went wrong two years ago. I'm not sure they give much of a thought to how they have affected my body forever, and how my DD's are affected by other health issues.

    Tea, I am at the point I don't say much to my mom or kids about how I'm feeling. I KNOW how I feel...they don't. This works best for me. After feeding them info, etc., they know more but still don't 'get' it. What I feel up for, I participate. When I don't I decline with no excuse.

    I am sorry you are dealing with this. Try to remember you are the informed one, not them. Easier said then done! You really don't have to explain yourself. If family, friends, whoever, start up with you, maybe you could tell them you won't talk about this with them and redirct the conversation, or tell them you need to go.

    Good luck Tea. It is so frustrating. This board was my safe place when I was diagnosed in 2003.

    Gentle Hugs,



    PITATOO Member

    I have sort of been in remission(if you want to call it that) for a few years now. So I do get out more often. But it is really only once in a while. I am a 45 yo divorced male and people don't understand why I don't meet someone else. I still work full time which takes up 110% of my energy. What's left. Once in a great while I can go out and have a few beers with friends but that's about it. Then I pay for it for weeks. I had to give up my business to take a full time job so I don't have to travel as much. I loved my business and it took me all over the World meeting new people and some most wonderful places. But it almost killed me. So now I am trying to get used to a lot, lot less pay and back in Corporate America. DOn't get me wrong I am happy to have a job and so blessed that I am healthy enough to work. But no-one understands my limits. By the time the weekend comes around I'd love to go to the movies but I can't I don't have the energy plus I am in too much pain. It takes me all weekend to recover from working all week. I have to try to hide my cognitive problems, as I am an Oracle Developer and Analyst. I would love to be married again but feel I would be a burden, I know I would. And I love to socialize and love being with people. People don't understand why I don't answer the phone that often at home. I don't have the energy to even talk sometimes. I guess I'm not help you at all other than to tell you I understand. So sorry...
  9. AlexC

    AlexC New Member

    Most people are seriously empathy-challenged. They cannot understand any reality that is not their own. I gave up a long time ago trying to get people to understand what it's like to have this illness. Even my mother and husband, who have always been hugely supportive and understanding, can't really fathom what I experience. On the rare occasions they have had the flu I tell them now imagine those horrible symptoms on an almost daily basis. I think that's when they really get it and then they feel depressed and deeply sad for what I have lost. The one thing I can say I've gained from this DD is a great and all encompassing empathy for those who suffer. Health is a great gift that is never appreciated until it is lost.
  10. jasminetee

    jasminetee Member

    Isn't is great that so many people here understand exactly what you mean? Not great that we're all going through it but I find it so comforting to listen to everybody's stories and how you're all dealing with this.

    I have the same problems in my life and although it's sad, it's so much easier to just accept the reality that most people don't understand this and not try to change their minds. We do the best we can every day.
    That's all we can do.

  11. MsE

    MsE New Member

    In March I accepted my daughter's invitation and went, with her, to her home in Croatia for a month. I had a wonderful time, and she was very considerate of my limitations.

    HOWEVER, I am still paying for it. Was it worth it? Yes. At least most of the time I can answer "yes." But since I've been home--since April--I've had very few "good" days.

    So, I am, overall, glad I bit the bullet and went with her, but I know I would never try it again. Not unless a miracle occurred and I suddenly was blessed with normal (what's the word? Oh yes, I remember...) energy.
  12. bigmama2

    bigmama2 New Member

    its so hard to deal with peoples lack of understanding. its one of the worst part of the whole dd. sometime i get extremely angry about it. and i vent. then sometimes i just try to accept it. because i cant change it.

    take care all
  13. Forebearance

    Forebearance Member

    I so sympathize with you, TeaBisqit,

    My rant is that when I do go out and visit my relatives, I sometimes have to go home earlier than they would like. I say that I'm running out of energy and have to go. Then they try to guess why I "REALLY" want to leave. They come up with all kinds of other reasons why I must want to go home early.

    The frustrating thing to me is that my real, legitimate reason for needing to cut socializing short sounds just like one of those convenient social excuses people make up! Nobody believes the truth! They seem to think I'm just using my illness as an excuse to get out of doing things.

    The truth is I have to have enough energy to drive home.

    Okay, end of rant.
  14. TeaBisqit

    TeaBisqit Member

    You are so right that we can only rely on ourselves.

    So today, I found out that the doc's receptionists were WRONG. The open MRI place does take my insurance. All they need is for the doc's office to get a form from my insurance company. So they put me through absolute hell for nothing and wasted weeks of my time. The receptionists kept insisting that the imaging place doesn't take my insurance and that I needed to out of county for it, over an hour away. And they insisted that they called the imaging place. Well, I called the imaging place, only fifteen minutes from my home, this morning and they couldn't believe the garbage I was told and that the doc's office actually made me try a closed one, knowing I can't do it. So I called the doc's office and told them to get the form. But I am so angry that I'm doing the receptionist's job. It it their job to know these things and get the correct information and forms for the patient. If I hadn't made the call, I'd never know.
  15. stschn

    stschn New Member

    A friend of one of my son's who is an RN was here and started in on questioning me about my illness. I felt like I was on trial so from the whittness stand I said I do not care to discusse my illness if you are that interested you can go to oslersweb.com and I changed the subject. When she brought it up again I said why don't you try the cfids.org web site and my husband-God bless him_ wrote it down for her. This will now be my standard reply as I too have HAD IT!
    [This Message was Edited on 07/02/2009]
  16. MsE

    MsE New Member

    I really like this reply. I, too, sometimes feel as though I were "on trial" and your response is perfect. Thanks for the idea. MsE
  17. lilaclover30

    lilaclover30 New Member

    I have never heard any of my 3 children say that "word" FMS. My DH, who passed away May 17th didn't either. They are very caring about how I get around though. I have developed OA on top of that and mornings are awful. I feel as if I can't get out of bed but I push and push myself til I am up, cleaned up and dressed.

    I go to my "Coffee group" at 8 a.m. each day exce[t Sat. (have church and coffee on Sun.) There are anywhere from 4 to 15 friends there and NO ONE has any idea what my problem is. They see that I use a cane so know something is wrong. If I didn't go I would have no idea what is going on in our small town where everyone knows evefryone. (not like they did when I was growikng up).

    As all of you have said, "no one knows until they walk in my shoes". I know of no one else who has this DD so that makes it even worse.
    my spirit is not as up now anyway. Before,. I went to ther NH (3 mi. away) every single day, called him by cell phone every a.m.and in the evening. Again, no one knows the lonliness until they have walked in a widow's shoes.

    I think I got off on another subject but it all ties in with lonliness doesn;t it?

    Take care and gentle Hugs,

  18. lil_biscuit

    lil_biscuit New Member

    I cannot begin to tell you all how much you helped me get through a tough night last night. I just had a falling out with a good friend because he insists that my ME and FM is all in my head. He says "when you meet the righ guy, this will all resolve itself". Then had added "you just won't allow yourself to enjoy life. I am very concerned for you." WTF?

    I tried to be patient with him, and offered to share some educational materials about these diseases with him if he was interested in learning more for the sake of understanding my situation. I emailed it to him, and he emailed back minutes later joking about the long email that must have "exhausted me to write". The next day, he came at me again, trying to force me to admit, as if he was certain, that this is all in my head. I was floored, and hurt. In talking to another close friend in our group last night, I discovered that two other men in the group also believe this is all in my head!

    I feel so betrayed, because it is tantamount to being called a liar or a cheater. I am even on SSD, which everyone here knows is impossible to get unless you are really very ill. I am sick of having to live through this nightmare of an illness, and on top of that, defend myself from people who are ignorant about the diseases. I feel so heartsick. This group of friends are people I have known for the last 6 years at the dog park. We celebrate b-days and holidays together, though I often can't make extra activities, taking my dog to the park and seeing my "friends" everyday was the bright spot. Other than that, I am bed-ridden for the rest of the day.

    This morning I took my dog to a new park. It was empty aside from the two of us. I felt lonely, but at least I knew that there wouldn't be someone there to hurt me.

    Reading all of your personal accounts made me feel not so alone at a moment when I felt very lost. Thank you for having the courage to keep sharing, because I'll bet everyday there is a new someone on here looking for that connection I so badly needed.

  19. TeaBisqit

    TeaBisqit Member

    Hugs :D You are not alone. So many of us go through it. I am so sick of the disbelief. I'm in so much pain all the time and the fatigue and sometimes it's so hard for me to think. It's like I have to struggle for the thoughts.

    To me, it's just so evil to act like we're lying or making it up or whatever. They should try having it for awhile and see how much fun it is. They all can't imagine how horrible it is to not be able to do anything you want to do in life. And to be in pain all the time. They judge us on our looks and that's it. We live in a disgusting world.
  20. zeowa

    zeowa New Member

    I was a social worker and potential post-grad student in psychology when I became ill. I had just moved to the west coast to escape the "victim" status I'd sort of inherited based on an abusive set of parents and a long-term boyfriend who left me for my best friend. I was really quite happy for the first time in my life! I was a person who was very aware of suffering and believed that one could overcome almost any obstacle. I had had a professor who had had CFS and, although I listened and cared, I certainly never "got it." I say this because I can recall what it was like to be young and not to understand what someone was sharing with me, but I wasn't an adult then, and to review how adults have been treating me since I got ill is devastating mostly because I've devoted my life to believing in the best in people.

    Over the course of 7 or so years, since getting CFS, I no longer consider myself to have even 1 friend. At first it was a gradual kind of winding down of calls, invitations and visits, but I felt I'd always have my east coast friends (who I'd been close to for 15+ years). We kept in touch by phone, but it only took 2 visits--1 canceled due to health, the other severely changed due to my inability to be well for the person's visit--for those friendships too to disappear. My family, unfortunately, followed me to the west coast years ago, and now have banded together against me. "Against" sounds like a strong word I know, but I think you guys will understand that perfectly "normal" people (who will tell others at length just how much they care and worry and hope you're going to get well) can behave as though people with this illness are the enemy. I liken it to how most people turn away when they walk by a homeless person on the street. There's just a gap in their ability to handle unpleasant (chronically unpleasant) information, so they blame us. I have tolerated my family and ex-fiance (who kindly left me on the street, with no car, his lease, and a house 20 miles outside of town!) first accusing me, then insisting that the diagnosis was "not as bad" as it sounded, then sending me emails or leaving me messages about how they can't be supportive because they're not MDs, how I've made it worse by "giving into the illness," and then labeling me "mentally ill," and listing my faults, my use of "bad judgment," and the list goes on! Whenever I have tried to calmly and briefly tell someone what I would like or try to help them understand, I've found the response to be sudden anger, defensiveness, and the claim that I can't be reasoned with and they'll talk to me when I"m "getting on with my life." I realize a lot of what I've heard is in the realm of abusive rather than just insufficient, but as a sick person, I'm not able to get away from it or find the connections I'd like to with someone or some people who might be less belligerent and selfish.

    I agree that it's possible to characterize other people's responses as "evil." That's been a tough conclusion for me to arrive at though, but if you look at the way people have been marginalized and disenfrancised throughout history, ignorance was usually to blame; but I'm not sure if we can call our modern-day peers ignorant... Since the advent of the internet, it's possible to get MDs, scientific, and social viewpoints on just about any issue or topic. It's really a choice to remain in the dark about someone's suffering. And it's definitely a choice to increase their suffering.

    Personally, I'm proud of myself and everyone who's posted here, simply for speaking their truth. I hope we can all maintain a connection to the part of ourselves that feels so let down and angry, because that means we don't yet believe what we are continuously told to believe about ourselves. It's sort of like the 60s for us I think, waiting for a small revolution to change the way people think, waiting to be seen!
    [This Message was Edited on 07/18/2009]

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