Last week, I found a form letter for "friends and family" from the HummingbirdFoundation website and posted it here on the forum for people to use if they wish to explain to "others" what we are going through with this illness.
M.E. patient's family and friends letter
I just, mindlessly posted it for other people to use but, when I had some time later, I thought to myself: "would I ever use such a letter?
I was brought up by European parents who always taught me not to share private information. When I was a teenager and got prety ill with Crohn's disease, I was told "the less people know the better". I carried this load in my heart and only my best friends knew of it because i would periodically "disappear" from school for a week "vacation" which really meant "hospital stay".
In addition, we are conditioned in our society to look up to people who while facing difficulties in their life, pull themselves together and act normal they are going through terrible adversities. How many times have I heard of specific people in my community going through cancer or heart disease and people admire them for their strength. They are admired for not complaining or even better, keeping it a secret from the community.
When I got "hit" by this virus 10 years ago and it developed into the most agonizing illness with constant pain and inability to function, it was a double blow. I felt deathly ill, yet no one knew what Chronic Fatigue Syndrome really meant. They certainly didn't think of it as anything serious. Even if they heard about it, their main understanding of it was that it renders someone a little more tired than others and somehow it's tied to depression.
My neighbors, friends and family started to see less and less of me. The few times I would be out, they would ask me where was I all this time? I was speechless as to how to explain to them what I'm going through. I would sound like a complainer (big sin!) or a malingerer or deranged somewhat - definitely depressed and becoming hermit-like.
No wonder that I lost contact from friends, some family and neighbors. No one called me that they didn't see me in synagogue during the high holidays. No one called that they didn't see me at family weddings or gatherings.
I think, they all have an image of me that somehow maybe I had a nervous breakdown or am in a deep depression which I can't get out of and that's why I have "disappeared".
I am suffering in silence and instead of looking at me as a "hero" like they would if I had cancer, they look at me as a weak, meek
defenseless loner.
Is it my responsibility to educate my community about this illness? i am thinking now that maybe it is. Maybe it is all of our collective responsibilities to educate whomever we know about this illness. It is not easy to do. We take the risk that they will look at us as making exaggerations and dare I say "complainers"?
Yet, we are upset that the world doesn't know enough about what having ME/CFS is all about. Maybe it's my fault and others like me. I am thinking now that it's better to tell it all with all the ugliness and pain attached to it. Maybe if everyone would do this wherever they lived, the world would start to get a feeling of what this illness really is.
It might be too late for us to change the people's view but, I think that we owe it to the next generation of patients to pave an easier way for them.
I am thinking now that the courageous thing to do is to stand up and tell it all!
What do you think?
M.E. patient's family and friends letter
I just, mindlessly posted it for other people to use but, when I had some time later, I thought to myself: "would I ever use such a letter?
I was brought up by European parents who always taught me not to share private information. When I was a teenager and got prety ill with Crohn's disease, I was told "the less people know the better". I carried this load in my heart and only my best friends knew of it because i would periodically "disappear" from school for a week "vacation" which really meant "hospital stay".
In addition, we are conditioned in our society to look up to people who while facing difficulties in their life, pull themselves together and act normal they are going through terrible adversities. How many times have I heard of specific people in my community going through cancer or heart disease and people admire them for their strength. They are admired for not complaining or even better, keeping it a secret from the community.
When I got "hit" by this virus 10 years ago and it developed into the most agonizing illness with constant pain and inability to function, it was a double blow. I felt deathly ill, yet no one knew what Chronic Fatigue Syndrome really meant. They certainly didn't think of it as anything serious. Even if they heard about it, their main understanding of it was that it renders someone a little more tired than others and somehow it's tied to depression.
My neighbors, friends and family started to see less and less of me. The few times I would be out, they would ask me where was I all this time? I was speechless as to how to explain to them what I'm going through. I would sound like a complainer (big sin!) or a malingerer or deranged somewhat - definitely depressed and becoming hermit-like.
No wonder that I lost contact from friends, some family and neighbors. No one called me that they didn't see me in synagogue during the high holidays. No one called that they didn't see me at family weddings or gatherings.
I think, they all have an image of me that somehow maybe I had a nervous breakdown or am in a deep depression which I can't get out of and that's why I have "disappeared".
I am suffering in silence and instead of looking at me as a "hero" like they would if I had cancer, they look at me as a weak, meek
defenseless loner.
Is it my responsibility to educate my community about this illness? i am thinking now that maybe it is. Maybe it is all of our collective responsibilities to educate whomever we know about this illness. It is not easy to do. We take the risk that they will look at us as making exaggerations and dare I say "complainers"?
Yet, we are upset that the world doesn't know enough about what having ME/CFS is all about. Maybe it's my fault and others like me. I am thinking now that it's better to tell it all with all the ugliness and pain attached to it. Maybe if everyone would do this wherever they lived, the world would start to get a feeling of what this illness really is.
It might be too late for us to change the people's view but, I think that we owe it to the next generation of patients to pave an easier way for them.
I am thinking now that the courageous thing to do is to stand up and tell it all!
What do you think?