Not ashamed anymore telling everyone I have CFS

Discussion in 'Fibromyalgia Main Forum' started by mrstyedawg, Jun 13, 2006.

  1. mrstyedawg

    mrstyedawg Member

    I have had CFS for the past 22 years. I have been to so many doctors and have been told that it was all in my head and that this is not a real disease. By not having anyone believe this is real I found myself hiding this illness and would not tell anyone that I was sick. This has all changed. I now tell anyone who asks that I have Chronic Fatigue Syndrome. They say "what is this" I then say it's an Autonomic Nervous System Dysfunction.

    I find that when I say Chronic Fatigue Syndrome they say Oh well you just need to rest. But when I say I have an ANSD and that the nerve endings running from my brain to all of my vital organs are malfunctioning they seem to accept this more.

    Why should we be ashamed and embarrassed!!!!!!!! Most of the medical community has made me feel this way, but no more!

    I have carpal tunnel and when I went to the doctor I told him, had to go to the emergency room Monday (had stomach virus) told the doctor there, told my daughters cheerleading coach. I do not care anymore if people believe this is real I KNOW IT IS. I am just sorry that it has taken me 22 years to get to this point.



    [This Message was Edited on 06/13/2006]
  2. KateMac329

    KateMac329 New Member

    I only wish I was that brave! People used to know I was sick but then when it went into remission with my pregnancy I guess everyone thought I was "cured".

    My husband and I have decided to keep it to ourselves but have let a few people know. I don't think *I* am going to tell many people again because I was treated different and I didn't like it.

    I am proud of you! You don't have anything to be ashamed or embarrassed about! Good for you sweetie!!

    ((HUGS))

    kate
  3. Marta608

    Marta608 Member

    I agree. I'm not ashamed to tell anyone about CFS/FM BUT - I am exhausted by what follows. The questions and/or well-meaning but ignorant comments are just more than I can deal with right now. So I don't mention it unless it's relevant to the situation and that saves me energy and stress.

    As if I meet up with that many people these days... ;>)

    Marta
  4. KMD90603

    KMD90603 New Member

    This is a real disease that we are suffering from with real symptoms. Maybe we're not to the point yet where we know what's causing it, however, research is coming a long way. And I believe some day we'll have more answers.

    I was diagnosed 2 years ago, but suffered in silence with the symptoms for 9 years. For a while, I was ashamed to talk about it. I was afraid to bring it up even to my friends and family. But then I realized that this illness is nothing to be ashamed of. It's NOT in my head, it IS a real illness. My fevers, swollen glands and sore throats do not lie. The doctors have even seen me while I've had these symptoms, and they know it's real. So, I refuse to let other peoples' ignorance keep me suffering in silence. The more people know about it, the more word gets out. I talk to my mother about it, I tell her about my good times and my bad times. She's seen me when I'm in the midst of a relapse and can barely stand. And she'll talk to her friends about how I'm doing so well in nursing school, even with this disease.

    My believe is that knowledge is power. As people hear more and more about CFIDS, the stigma associated with it disappears. And, like other illnesses such as lupus and MS, people realize that we are sick, not crazy.

    Gentle hugs,
    Kim
  5. sues1

    sues1 New Member

    Your last paragraph says it all.......Great insight!

    I remember when folks would look at me strangely and look like they wondered about me being "off".....But I pressed on being honest MOST of the time.

    But it is different now and I get respect and courtsey. People are accepting it as a real illness and more and more people know others with the same illness.We are getting recognization more and more.That leads to more research, etc.

    If there is a elephant in the living room, do not try and hide it.


  6. Jordane

    Jordane New Member

    Good for you!!!

    But tell me why should we be ashamed?? Having this is no different than any other disease.We are sick!!!

    This DD. is acted upon the same as a mental problem.

    Just because it cannot show up on an xray,like a broken bone.Does not make it NOT THERE!!

    It dang well is!!!!

    WE ALL KNOW IT IS!!!

    So hunny we definately have nothing to be ashamed of!!!!

    Take Care!!
    Jordane
  7. kalina

    kalina New Member

    We need more people like you who will stand up and be honest about having this DD! Pushing it under the rug isn't doesn't promote awareness, and often makes us feel loneliness and shame for having an illness we didn't ask for.

    We all know some people who will never understand. It can be hard to come "out of the closet" to them, but if you are strong and are able to ignore theiir negative reactions, tell them anyway. Keep it to yourself if you feel that coming forward will do more harm than good to yourself.

    I am proud of you, and anyone who refuses to be bullied into silence anymore!

    Kalina
  8. shootingstar

    shootingstar New Member

    Wish they had called this something else. It's difficult telling people about having CFS because most have a preconceived notion of it being a sort of trivial thing. Hopefully with more awareness, education etc., more will know it can be very debilitating.
  9. vickiw

    vickiw Member

    Remember the early days of AIDS and Ryan White? What a stigma it was. It took years, but AIDS victims are no longer treated like lepers and outcasts.

    Of course there are differences between the diseases, but the point is, AIDS victims were persistant, willing to come out in public and not shy about getting attention.
  10. i went to my doctor yesterday.i hardly ever go.but everything about this ilness has been getting me down ALOT just lately.

    i have fibromyalgia/ME chronic fatigue syndrome.ive had these illnesses for 12 years now.

    anyway i just broke down in front of my doctor,i cried my eyes out.then told her i was sorry for appearing weak.

    i woke up one morning 3 month ago and my jaw had popped out of place,i was in the most horrible pain ive ever had before.well i coped with this pain for 3 month,all by myself because im always told..oohh you have fibromyalgia,im sorry i cant help you.

    well i managed to get the jaw back into place,but it popping out caused me to tear some facial muscles,thats why ive had alot of pain these few months,and the doctor told me ive got to eat mushed up food only,in order to rest the jaw at meal times.

    well,i asked my doctor..do you have any other patients with ME/fibromyalgia? she said yes,and left it at that.but i broke down crying again and said...i cant cope with the pain anymore,im sick of having to be brave and soldier on day in day out.

    she kind of looked at me with her kind face and said..well we do know that your illness is caused by a virus,and one day i will be able to help you feel better.just give science more time,and dont give up being brave.

    i came away feeling at least a bit better in myself after hearing her say..well we do know that your illness is caused by a virus.

    i always knew i wasnt going crazy,it wasnt all in my head.im ill because i caught a virus.and im never going to be affraid to tell people i have a illness.

    i tell people i have a muscle illness and theres no cure as yet.it isnt going to kill me,but it cripples me whenever it feels like it.and thats why im different from the person you remember me being years ago.

    if my jaw hasnt gotten better in the next 3 weeks,my doctor is sending me for xrays.at least im getting some help at long last.and who knows,it might not even be due to my fibro..doctors always think everything is dont they.

    kind regards
    fran
  11. mrstyedawg

    mrstyedawg Member

    thanks for all of the replies. My mom and I would go out and she would start to tell people that I was sick and I would kinda bump her leg to let her know not to say anything because I was afraid people would think that this illness is all in my head and would not believe that it is real. It wasn't really that I was ashamed as much as I was afraid noone would believe me.

    I, also, do not like the term Chronic Fatigue Syndrome. It makes this seem trivial. Hopefully, they will one day change the name to something else. I have had a friend for twenty years. Mostly it is more of a phone friendship than anythingelse. But she has known about my illness for years. But even she did not understand. She would say you just need to rest more and things like this. Well, last year I got her to take me to my doctors appointment 6 hours from where we live.

    After the appointment, we went to our hotel room, where I was very, very, sick. I couldn't breath, was vomitting, and exhausted. This just from making the trip. When she finally saw me in one of my bad flairs, she totally changed the way she saw me and related to my illness.

    If more people could see with their eyes how this affects us there would be more understanding. But at least we all have each other.

    Love,
    Andrea