Explaining Fibromyalgia To Friends & Family

Discussion in 'Fibromyalgia Main Forum' started by techno, Aug 7, 2005.

  1. techno

    techno New Member

    Family member ask's : "What exactly is Fibromyalgia?"

    So I want to explain by saying:

    Fibro is a Brain and central nervous system disorder where
    the nerves generate pain signals intermittently from mutiple areas of the body.
    Also, causes cognitive dysfunction, memory loss, irritable bowel syndrome, irritable bladder, dysfunctional autonomic nervous system (causing spells of low blood pressure, body temperature dysregulation(hot or cold),
    extreme fatigue, sleep disturbances, numbness & tingling in
    hands and feet, and depression, anxiety & irritability.

    But I only get to say :

    Fibro is a Brain and Central Nervous System disorder where the nerves generate pain signals intermittently from multiple areas of the body. .... Then I get cut off...

    The person overtalks me and blah! blah! blah! about other crap that has nothing to do with the subject being discussed.
    Totally invalidating what I'm trying to say... moving
    converstion off to another vein.

    Now, is it me or are people just too selfish,self-absorbed,
    and inconsiderate to listen for 1 minute while we explain
    our illness to them.
    Are we obliged to explain it in 15 seconds or less!

    How do you explain our illness to others?


  2. Frustratedandtired

    Frustratedandtired New Member

    I am newly diagnosed and I get this from some people. But I did find a simple way to describe it to my teenagers the other day on a website. I asked them to remember the last time they were very sick with fever, aches, and pains and when they were just starting to feel a little better is how I feel most of the time. They got the point then.
  3. Suzan

    Suzan New Member

    It is probably something that anyone with a disability or illness has to deal with. MOST people really don't want to know. Most people don't really give our lives a second thought when they aren't with us! I am not sure if that is good or bad..but I do think it contributes to why people with illnesses of any sort really are just one of the types of "forgotten" people in this country.
  4. okapi

    okapi New Member

    I don't have FM, I have chronic fatigue, but I tell people it's like having the flu every single day of your life.

    That doesn't seem to do it justice, but when someone I know was down with a really bad flu they said to me, with awe in their voice, "so this is how you feel EVERY DAY??"
    And I think they got it.
  5. Toga

    Toga Member

    When they would ask what's wrong, sometimes for the 6th or 7th time, I used to explain it as quickly as I could. You are right about attention spans. They don't have any. They don't have memories either.

    I never bring up how I feel now and they never ask. They don't care.

    That's all right. I must confess I'm beginning not to care how they feel either. What goes around comes around.

    Toga
  6. ibisgirldc

    ibisgirldc New Member

    If I bring it up, I just tell people that I have a chronic pain condition. If there's a reason to say more, I explain that it's fibromyalgia and that it's similar to arthritis but with all-over body pain and other symptoms. I only get into the details when there's a reason to give more info.
  7. Muddieanne

    Muddieanne New Member

    People really don't care and I am starting to not care about them either.

    I had a very hurtful conversation with a longtime "friend". Actually it was a verbal attack.She said that all I ever do is talk about my pain and that other people are in more pain than I and they don't complain.

    The verbal attack went on for several minutes. She never apologized because she doesn't think she did anything wrong.

    We were friends for 40 years.I decided that I am better off without her "friendship"

    If she could show so little compassion,imagine how little others care.

    I get my support and caring from all of you on this board.It still amazes me that all of us who have never met give so much to each other.

    Marie
  8. lovethesun

    lovethesun New Member

    This site has pamphlets which you can order free of charge.I just hand them a pamphlet and tell them to read it in their spare time.I keep one or two in my purse all thge time
  9. kalley167

    kalley167 New Member

    I would be interested in some of these.
  10. lovethesun

    lovethesun New Member

    but I couldn't find it on the site again.I wrote them an e-mail.I'll keep you posted
  11. NyroFan

    NyroFan New Member

    Techno:
    I stress mainly that it is a very painful disorder affecting the entire body. They seem to relate to that one word: pain. It is universal and easy to understand. And short and to the point. Usually it keeps them quiet then, at least for me.
    NyroFan
  12. lvjesus

    lvjesus Member

    click on the first "post" with the title of CFS & FM Patient’s Guide and it will take you to the form to fill out. I ordered one just to see what it was. You can get as many as you like I think.

    Sonya
  13. mjwarchol

    mjwarchol New Member

    I cut and pasted this from this site previously, it explains it all.
    LETTER TO FAMILY AND FRIENDS (INVISIBLE DISEASES)
    I’m not trying to speak for everyone, but from my own perspective I can tell you what I NEED from my family and friends and so seldom get.

    I NEED TO BE SHELTERED dropped off at the curb and told, don't try to do that, let me help you.... There is so much going on in my body that I have no control over and it does get overwhelming and exhausting to my body.

    I NEED TO FEEL PROTECTED even though I can't be safe on the inside at least I can feel if ANYONE or ANYBODY wants to "get at me" then they are going to have to "GO THROUGH" my protector.

    I NEED TO FEEL CHERISHED as if my family or friends feel they are blessed for each day we have together, LIFE IS SO FRAGILE.

    I NEED TO FEEL CARED FOR when I am feeling sick everything is hard to do, even dressing and I WOKE UP WITH ONLY 2 MILES OF ENERGY INSIDE OF ME AND A NORMAL DAY TAKES 25 MILES WORTH. I need someone else to say, "let me empty the dishwasher", or “so what do you need me to do?” I FEEL GUILTY when I can't do the daily inconsequential details that are theGLUE HOLDING THE HOUSEHOLD INTACT.

    I NEED TO FEEL RESPONSIBLE I know the latest research, I am on the internet each day to learn more, please don't say B-12 might cure me, I’ve tried the miracle cures and read the articles. DON’T YOU KNOW how DISAPPOINTED I GET WITH MY OWN BODY for NOT COOPERATING?

    I NEED TO FEEL FORGIVEN for NOT being a full person (in the world's view). You may not hold a grudge, I know it’s hard on you to pick up slack, but I don't FEEL FORGIVEN, I feel guilty.

    I NEED TO FEEL LIKE PART OF A TEAM working toward a common goal (our life together) and it is OK if my main contribution is SPIRIT.

    I NEED TO FEEL INCREDIBLE I get angry sometimes seeing a tennis mom sachet into lunch with the girls after a manicure. I WISH I had the energy to even have a manicure, let alone waste precious energy on such frivolous pursuits as gossip over lunch and judging other women's clothes and homes and accomplishments.

    I NEED TO FEEL AFFIRMED So many people scoff when I can't "Do just this one little activity, and it IS EXPECTED." I get tired of feeling guilty for not BEING ENOUGH to people that I don't care about in the first place. When I rant over the injustice of my illness, don't try to talk me out of it, or encourage me, ust say "I KNOW, IT ISN'T FAIR, YOU DON'T DESERVE THIS"

    I NEED A FRIEND who is there for me on the good days and there for me on the bad days, too. I get left out of a lot, because I go for periods of time when I am unable to do much, they think I probably can't participate, so they forget about me, or just don't even invite me. It is LONELY being ill over a long term.

    I NEED TO BE ENCOURAGED The thought of being sick like this for the rest of my life INDUCES WAVES OF PANIC. It sometimes seems like a life not worth living, the quality is so poor so much of the time. I’m a Christian, I have great faith, but it can be overwhelming, especially when it’s implied "if your faith were greater, or if you would just DECIDE not to be sick....." We HAVE ALL TRIED THAT - it doesn't work.

    I NEED TO BE PRAYED FOR Frankly sometimes in the middle of the night when everyone is sleeping soundly and there are only the creaks of the house for company....I'm SCARED, REALLY SCARED. I wonder who will remember me when I’m gone and if I’m making any sort of impact on the world at all to validate my life. REALITY looms large and feels ominous. It seems like I’m PURSUED NIGHT AND DAY BY A STEALTHY UNSEEN STALKER, who knows my every move. It would feel wonderful to really believe I am actively prayed for.

    I NEED TO BE ANTICIPATED if I am sick in bed, know that I am dying inside, because I am neglecting things that need to be done, and the PRESSURE AND STRESS TO GET WELL is VERY GREAT because I know when I do get out of bed THERE WILL BE EVEN MORE RESPONSIBILITY WAITING FOR ME than BEFORE I wore myself down into a state of exhaustion and bedrest. Just come on over and SILENTLY DO SOMETHING/ ANYTHING, and don't even expect gratitude, I may not even realize, but when I get up a lighter load will be blessed.

    I NEED TO BE NURTURED I just got an email requesting a group of us to get a nice meal up for someone, because she is down with the flu, poor husband for taking care of her! I LIVE WITH THE FLU EVERYDAY OF MY LIFE! The last time a a meal was brought to us, was a year ago, after I had been extremely sick for 6 weeks. Before that it was years. No one even THINKS of reaching out to a chronically ill person, because they might be EXPECTED to do it monthly or because they are so used to you being sick, they don't even realize sick MEANS SICK. Our families suffer too, and would like a warm meal, as much as the lady who just had a baby or the woman with toe surgery.

    I NEED TO BE APPLAUDED give me CREDIT for being a SURVIVOR AND A THRIVER. TO KNOW that there are women out there who have never had more than a broken acrylic nail and an unreliable housekeeper, is infuriating sometimes, especially when it’s implied they must be better than me or I wouldn't be sick all the time and unorganized and uninvolved. I know we don't know what people's lives are like behind closed doors, but I would love, have prayed, to JUST BE SHALLOW FOR A DAY and take every STEP, BREATH AND ACTIVITY FOR GRANTED without deciding WHICH few things I could do today that will make a difference over the next 30 years (it is almost always be a good mom and wife).

    I NEED TO BE RESPECTED I am intelligent, I am attractive, I was once beautiful.... It is depressing to swell into a stranger because of meds and to have no clothes that fit attractively. I'm too tired to shop for them, and if I did shop for new clothes, I wouldn't have energy to wear them anywhere anyway. I CAN DO THINGS, I just can't prove it very often. I AM SOMEBODY not a disease, but the disease overshadows my chance TO BE MYSELF.

    I NEED TO FEEL NORMAL Sometimes it feels like a BOLT OF REALITY HITS ME, as if I JUST REALIZED I am not a healthy person for the very first time. It doesn't seem real or possible for a minute, almost shocking. I can't do everything, but sometimes it would be fun to just play with no worries. HELP ME ESCAPE for a few hours to a play or comedy club, somewhere different where no one knows and I can forget.

    I NEED MY DIGNITY It’s important for me, with so little control over anything else in my life, to at least have my dignity. Please DON'T SPECULATE ABOUT ME with other family members or friends and compare notes about my progress or lack of progress or determination or mindset, or your opinion of what I could, should or ought to be doing differently. It is easy to be smug when you aren't wearing lead ankle weights each day and trying to walk through neck deep water, this is what it really feels like. Everything is ten times harder for me than it is for you.
    I NEED TO FEEL ACCEPTED AND INCLUDED not like a project to be SCRUTINIZED for worthiness and validity. I’m not going to doctor after doctor and struggling to survive for ATTENTION. Believe me, if I wanted attention, I’m bright and capable enough to get it in other ways. I’d rather be noticed for my good qualities and accomplishments. Even if I were getting attention, which I’m not, it certainly isn’t worth all this seclusion and suffering. REALLY who WANTS to have medical tests run and spend travel money on medication?

    Not every day is like this, there are good days, and that is what makes the bad days even more depressing sometimes, because you realize what you are missing.
    DON’T TALK, JUST DO. Actions speak louder than words. You have the freedom to buy a plane ticket and go anywhere in the world and enjoy it. You can take a job, or join a club, or garden or take a hike or run in to a new shop or.............anything you decide to do on a whim. I have to think and plan and strategize. I am afraid to make plans because I really don't know if I will be able to follow through on them. Even planning takes energy, which may not leave enough energy for the actual doing. YOU PLAN SOMETHING and pull me along, with no responsibilities and NO GUILT if I can only do half of the plan...at least we will have done something.

    Brigett (Hope)



  14. Musica

    Musica New Member

    I like the idea of little cards, if written clearly - as if everyone has fibro fog! I think the original explanation was a little too scientific - people will turn off to talk about a brain and central nervous system disorder. Explain it in ways they can relate to - pain all over (like a permanent flu), abdominal disorders, etc. partly caused by poor sleep, and without a cure. People sometimes want to know, or say they do, but they don't want to know THAT much!! When they don't know anything about it, a simple explanation about pain and other symptoms, and that it is a whole body syndrome without known cause or cure, will hopefully be enough to let them know that this is BAD STUFF.