Fibromyalgia: Letter to Normals

@patgalca (18181)
Orangeville, Ontario
December 13, 2007 2:25pm CST
Below is what is called a Letter to Normals. This was written to help those who have a loved one with fibromyalgia better understand the disease. This letter goes around and around the internet. Feel free to pass it on to anyone you know who may be struggling with their loved one's diagnosis of fibromyalgia. ~~~~~~~ Allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person’s time is their most valuable asset and yours is appreciated. I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed. And because of this judgments are made that may not be correct… So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well. You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You wont see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can’t see it and do not understand.... Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die.... Most of my "friends" are gone; even members of my own family have abandoned me. I have been accused of "playing games" for another’s sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because the burning and pain in my legs or arms is so intense I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm. I feel like a child at times... Just the other day I put the sour cream I bought at the store in the pantry, on the shelf, instead of in the refrigerator; by the time I noticed it, it had spoiled. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to “lose” the laundry, only to find it in the stove instead of the dryer. As I try to maintain my dignity the Demon assaults me at every turn. Please try to understand…. Sleep, when I do get some, is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity. And just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. And there are those who say “but you did that yesterday!” “What is your problem today?” The hurt I experience at those words scars me so deeply that I have let my family down again; and still they don’t understand…. On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I love my kids and grandbabies and shine when they give me my hugs or ask me to fix their favorite toy. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I love you and want nothing more than to be a part of your life. And I have found that I can be a strong friend in many ways. Do you have a dream? I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life. So you see, you and I are not that much different. I too have hopes, dreams, goals… and this demon…. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now. Please understand…. Thank you for spending your time with me today. I hope we can work through this thing, you and I. Please understand that I am just like you… Please understand…. Copyright of www.fibrohugs.com Written by Ronald J. Waller
4 people like this
10 responses
@faith210 (11224)
• Philippines
14 Dec 07
Hi patgalca! After I read your discussion, I did a research on what fibromyalgia really is. And I learned that it is a condition that can not be easily detected and the pain that causes an affected person can really be devastating, emotionally and physically. So, I really feel sad about this letter and people affected by this condition. I can only hope and pray that families having a member who suffers fibromyalgia should be more understanding and supportive of the person affected. And as I searched on the signs and symptoms, I felt frustrated that this condition can not be easily diagnosed because lab tests usually comes back normal. How frustrating this is for people who are suffering in this condition but are still at a loss of what their condition is. I can only hope and pray that they will be given all the support that they need. Thanks for making me aware of this condition of my friend. Take care and have a nice day! :)
@patgalca (18181)
• Orangeville, Ontario
15 Dec 07
I have my husband's support, but there are times when he gets frustrated and would like to kick my butt out the door and into the working world. He'll be happy when I finally sell a novel. My father was my biggest support but he past away in February of 06 and it is very hard on me not having his support. He really cared. My mother is being more supportive now but my siblings don't even think about it. They still think of me as a spoiled brat (the youngest). My kids are good, though. They are very good since they have had to live with it all their lives and really know nothing else. They are helpful and supportive. My eldest daughter (now 14) was her sister's caretaker. At 4 years of age she gave her one-year-old sister a bath because I was unable to and she had gotten into something awful messy. I hate feeling like crap every day. I can't remember what it feels like to be well. Thanks for your support. :)
2 people like this
@faith210 (11224)
• Philippines
16 Dec 07
Hi patgalca, my dear friend! I never realized that you were afflicted with fibromyalgia. You will always be in my prayers and I hope you will find the inner strength to beat all the odds. Take care my friend and have faith. :) Merry Christmas and Peace to all!
• Saint Vincent And The Grenadines
14 Dec 07
It really has to be tough and painful to fight against such illnesses like fibromyalgia or any other similar. This also includes those who suffer from weird diseases that big Laboratories refuse to investigate properly because affecting such a few amount of people they're not worth the economical effort. So all I want to say is that we should all be more supportive with these people suffering and their families, who suffer almost as much, and i demand the public administrations to provide more means and support for these people and their families.
2 people like this
@patgalca (18181)
• Orangeville, Ontario
15 Dec 07
The government and health insurance companies would rather say it doesn't exist and let us fall into poverty than help us out. I had private detectives following me around. And now, 11 years later, I have no income and am unable to work. My husband is struggling to support this family alone and I do all that I can to help, but some days I just feel like crap.
1 person likes this
@KrauseHome (36448)
• United States
28 Jun 11
Quite interesting and since I have just been diagnosed with Fibromyalga, this helps explain things a little. The funniest thing, is people do not always understand and want to call me lazy, etc. But it has a name, and something I would not wish on anyone like right now when it hurts to do anything. Will there ever be a cure? I don't know. Problem is how many people have this that have no idea and so many Doctors take their time if ever diagnosing.
@ElicBxn (63235)
• United States
13 Dec 07
Thanks for posting this. I have copied & sent it to some of my friends and family. I don't dare send it to my idiot brother, but I sent it to my sister who can talk sense at him.
@patgalca (18181)
• Orangeville, Ontario
15 Dec 07
I am glad to have been of some help. I hope it works.
1 person likes this
• United States
6 Nov 11
I can't thank you enough newly diagnosed and a family that does not understand this is a blessing. You've helped more than you can ever know, God bless!
@clocks123 (1225)
• United States
26 Dec 07
oh thank you for this letter. i wish it was shown in dear abby or dr's mailbag in the newspaper so EVERYONE can read it and try to understand what this all is. you have said it so clearly. i know my memory is lost, i have to think of the word i want to say or remember something i hesistate. concentration is very difficult i have to go over it again and again. when i worked i had to have them explain over and over again, the supervisor was annoyed with me!, I AM on disability now, friends, no, the computer that is it. thank you for writing this letter.....
@patgalca (18181)
• Orangeville, Ontario
26 Dec 07
I did not write this letter. It has been making the circuit for several years and I don't actually knew who wrote it. It is unfortunate that credit has been given to the actual letter writer. Perhaps you could forward it to Dear Abby and see if she prints it. Fibromyalgia certainly needs more awareness. I know about having more friends online than in life. In some cases it has to do with the fibromyalgia, in others it is because I am a writer and being a writer is a solitary life. Take care and Happy New Year!
1 person likes this
• Australia
23 Feb 11
thank you,thank you, thank you! No-one understands but i will pass this on to family and the few friends i still have and hopefully they will get some idea of the nightmare that my life is. This might mean that visit me more often instead of leaving me here alone all the time. I have developed another condition top of FMS and MPS! It is a bizarre form of tinnitus which has nonsensical words or sounds screaming in my head 24/7 for the past 3 or 4 years. (Called auditory hallucinations though they are not hallucinations as most understand that word; they are more reminiscnet of the song you can't get out of your head rather than something that means you have lost touch with reality. They are so bad i cannot even read novels any more. This condition means that i find going out even more difficult due to 'musak' which escalates the noises in my head as do electromagnetic fields formed in gyms and shopping cnetres etc by electricsl equipment. i feel i can't stay sane for much longer. if anyone has heard of this and has some ideas please help me. The distress caused by the reduction of my life from a sucessful professional, physicaly and socially active, to a life reduced to trying to manage to get the house into some semblance of order each day - and usually not succeeding - and where no activity offers any opportunity for joy. I think that all these conditions are caused initialy by spinal subluxation and I am having treatment for this currently.
@kareng (54680)
• United States
13 Dec 07
Very good letter that anyone that has Fibro can relate to!
@garyeye (202)
• Philippines
15 Dec 07
I have crossed upon this illness a day or two ago, i'm working as an attendant in an internet cafe and a nursing student asked for help for printing her paper works and her paper work was about fibromyalgia. It saddens me to think that there's no cure yet for this illness and for some time doctors diagnose this as "just in your head" illness. And the best and effective way of treatment is the "trial and error method" my jaw just drop for this arcane and arcaic way of treatment. My prayers is that Doctors will soon find a cure at least a better treatment for this.
13 Feb 10
Thank You for this post, I just cried as i read it because this is me. I dont have a support system. My family thinks Im just making excuses. Im a LPN and quit working in 2006. I started going back to school in 2008 to get my RN degree and it is very difficult. I stuggle more than anyone else. My memory is aweful. I feel stupid. I dont know if i can make it through nursing school because Im falling way behind the other students. I made honors when I was in college when i was younger; my classmates now get irritated with me and I just want to quit. I dont get sleep. Im up late everynight studying and my body hurts more and more. My husband and my 2 college age kids dont understand. I was diagnosed in 1997 and my family has never read anything about the disorder and is always questioning me like, Why are you in bed this time of day? Why you keep asking me the same question? Im tired of trying to explained to them my fibromyalgia is the cause of my fatigue and forgetfulness. I feel so alone. I lost all my friends because I cant keep up with activities so they just dont bother with me anymore and that hurts. But it was really nice to hear from someone that knows what Im going through. Thank you again!!!
25 Apr 10
I gave this to my son to read because I know he doesn't understand mostly because he's only 13yrs old n sees his mum has turned from fun loving to a zombie. I have mood swings cus I can't cope with pain, relationships or life. He said it was depressing but when I asked if he understood he said he did. Sometimes it's hard to know the wors to explain but this letter gave me the words and I thankyou for that opportunity. I'm my worse enemy and theirs days when I'm totally gone, numb not even alive but no one seems to see it so theirs nothing wrong with me. I've got a long way to go but this letter has helped me start my path to this not welcomed path. X