Hopefully
Member
- Joined
- Jan 21, 2014
- Messages
- 14
- Reason
- DX FIBRO
- Diagnosis
- 01/2000
- Country
- CA
- State
- ON
There are lots of theories out there about FMS/CFS. It's a thyroid problem, it's a digestive problem, candida, it's an autoimmune problem, etc. But not enough research is being done to get to the bottom of it. The reason for that is twofold, in my opinion.
1. Fibromialgia and chronic fatigue are not visible disabilities. Supposedly, 'it's all in our heads'. It has a huge stigma attached to it like mental illness because the 2 are closely interrelated. Unless you have a sign on your chest saying "I have FMS/CFS " people assume you're lazy, unmotivated, lacking in ambition, etc etc. It changes who you are as a person.
Society values winners, go getters, high energy, multitasking people. Our buzz words and phrases are 'just do it', 'live every day to the fullest'. You know the rest. I cringe when I hear/read these phrases. I want to scream, "oh ya? Live a day in my shoes! Because I'm lucky if I manage a shower and prepare a meal today."
Because we lack the energy to even sit up (sometimes I have to lie down or fall down), because every movement causes pain, we opt out of so many meaningful things in life. Slowly we slip down the ladder of esteem of what society values.
On a few good days you get out there and try to participate so you see, there's nothing really wrong with you. It must be in your head. How many have heard those words? I don't feel bad enough for my lack of ability to do everyday things so my 83 yr old mother and my 79 year old neighbour feel the need to rub it in when they go out to shovel the driveway and point out how old they are compared to me.
Should it be really be necessary for me to tell everyone I meet that I have FMS/CFS and then explain what it means?
2. The second reason there is so little funding for research is because no one has ever died from it. At least FMS/CFS has never been shown as cause of death. But don't be fooled. It is a killer. It kills very slowly and painfully. It kills our will to live. It kills our ability to provide a decent living for ourselves and our families. It reduces most of us to a poverty level existence.
I read this morning on another fibro website that research shows that swearing, using cuss words can help alleviate the pain. Really? There are no other more vital uses of the few research dollars available on this issue? Is our pain and struggle to survive such a trivial issue?
Is it any wonder most of us just want to give up, throw in the towel. I've spent the morning crying for no reason really. Just sheer frustration.
1. Fibromialgia and chronic fatigue are not visible disabilities. Supposedly, 'it's all in our heads'. It has a huge stigma attached to it like mental illness because the 2 are closely interrelated. Unless you have a sign on your chest saying "I have FMS/CFS " people assume you're lazy, unmotivated, lacking in ambition, etc etc. It changes who you are as a person.
Society values winners, go getters, high energy, multitasking people. Our buzz words and phrases are 'just do it', 'live every day to the fullest'. You know the rest. I cringe when I hear/read these phrases. I want to scream, "oh ya? Live a day in my shoes! Because I'm lucky if I manage a shower and prepare a meal today."
Because we lack the energy to even sit up (sometimes I have to lie down or fall down), because every movement causes pain, we opt out of so many meaningful things in life. Slowly we slip down the ladder of esteem of what society values.
On a few good days you get out there and try to participate so you see, there's nothing really wrong with you. It must be in your head. How many have heard those words? I don't feel bad enough for my lack of ability to do everyday things so my 83 yr old mother and my 79 year old neighbour feel the need to rub it in when they go out to shovel the driveway and point out how old they are compared to me.
Should it be really be necessary for me to tell everyone I meet that I have FMS/CFS and then explain what it means?
2. The second reason there is so little funding for research is because no one has ever died from it. At least FMS/CFS has never been shown as cause of death. But don't be fooled. It is a killer. It kills very slowly and painfully. It kills our will to live. It kills our ability to provide a decent living for ourselves and our families. It reduces most of us to a poverty level existence.
I read this morning on another fibro website that research shows that swearing, using cuss words can help alleviate the pain. Really? There are no other more vital uses of the few research dollars available on this issue? Is our pain and struggle to survive such a trivial issue?
Is it any wonder most of us just want to give up, throw in the towel. I've spent the morning crying for no reason really. Just sheer frustration.