I said my imaginary disease was giving me severe problems.
He wrote back that my imaginary disease was my age.
I'm 40.
There is just no understanding.
Posted by slcd (Member # 5708) on :
That's what we're here for! To be the understanding people in your life! :-)
People don't understand what they've never experienced. For instance, I volunteer with a not-for-profit organization for people who were parentally abducted as children...because I was one of those kids. When I started volunteering my "best friend" told me, "Maybe this will help you get over your mommy issues."
No experience...no understanding...
Posted by LightAtTheEnd (Member # 24065) on :
I just always get, when trying to explain to someone what my symptoms feel like, the, "Oh that happens to me all the time" response.
If I try to describe my fatigue, especially why it prevents me from doing things, they say, "I was tired yesterday when I got home from work."
If I talk about my memory blips, which are fortunately few but nonetheless startling when they happen, they tell me some story about when they lost their car keys.
What I hear when they say those things is not that they understand how I feel because they have a point of comparison, but rather that they think my serious chronic illness is no worse than the same minor things that happen to everyone all the time--which doesn't stop THEM from doing things, so they don't see why it should stop ME.
Some of them actually mean to be supportive and sympathetic, but they truly have no experience that really compares, and they don't know what to say.
Some of them are just rude and mean and don't give a rip.
There is one friend I talk to every day and tell about how I am doing, and that friend has a pretty good idea of all the ups and downs I've been through. Most people really don't want to know all the gory details, so it's hard to find somebody you can truly talk to about it.
I also get some reactions from relatives who just tend to criticize any change I make in my life, which they later accept and take in stride. Sometimes people's first instinct is to be critical of whatever they don't understand.
I hope you can find SOMEONE who understands you and supports you.
Posted by METALLlC BLUE (Member # 6628) on :
Light, I experience the same exact thing. When people ask me how I'm doing, I simply say "You want the truth or a lie?"
It disarms them so that they're prepared to hear information that I'd gladly lie about if only to avoid talking about it. It gives them a chance to also re-access whether they want to even ask the question.
Posted by MamaBear11 (Member # 25116) on :
When someone asks how I'm doing, I just smile and change the subject. Those who know me know how I'm really doing, and I know it's just a formality that they are asking.
Those who truly care don't ask me how I'm doing, they ask how they can help.
I'm sorry you got that response from your 'friend.'
Posted by John S (Member # 19756) on :
I hate to admit it, but when these things happen I wish the disease on others. Not for years, like me, but for a few months.
Posted by Keebler (Member # 12673) on :
- Some friends need to be set free. Friends we make along the way are not all meant to stay with us through all phases of our lives. Some friends are just "cycle friends" and need to move on with the wind. Appreciate the good times, the connections and shared wonder where it existed. But as we grow, relationships also grow - or fade away. It's just natural, really.
Letting go of certain friendships when needing to do so is just part of life. If growth is not mutual, drifting is then healthy to both. -
Posted by RESOLVED. (Member # 24991) on :
Gosh, I love you guys!!! Oh, the wisdom on Lymenet! MamaBear is right, those who truly care ask how they can help.
And Keebler, as usual, is right on. Some friends just are for a time. As difficult as that may be to accept, it really is just a part of life.
Posted by INEBG (Member # 27690) on :
When someone asks how I am doing, I just say "hanging in there." It's nebulous enough, almost never draws a query for further information, and seems to satisfy the need for a response in social situations.
Posted by Keebler (Member # 12673) on :
- John,
You need to read the current Newsweek article on lyme before anyone else in your circle does. It's full of lies, but you need to be prepared to just tell your wife or others to go to the real research at ILADS:
John S...some things never change, I haven't talked with you in sometime.
If you remember, I also, have never had any support from my wife, family, friends etc....
All I can tell you is, don't discuss Lyme disease with anyone unless they have it....Sad but true!
I'm glad to see your back in the loop.
Posted by ThatColorGreen (Member # 16016) on :
quote:Originally posted by MamaBear11: When someone asks how I'm doing, I just smile and change the subject. Those who know me know how I'm really doing, and I know it's just a formality that they are asking.
Those who truly care don't ask me how I'm doing, they ask how they can help.
I'm sorry you got that response from your 'friend.'
Ditto.
Posted by John S (Member # 19756) on :
quote:Originally posted by steve1906: John S...some things never change, I haven't talked with you in sometime.
If you remember, I also, have never had any support from my wife, family, friends etc....
All I can tell you is, don't discuss Lyme disease with anyone unless they have it....Sad but true!
I'm glad to see your back in the loop.
I wish I was able to say that I've beat this disease, but sadly no.
[ 08-26-2010, 10:56 AM: Message edited by: John S ]
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Keebler: - Some friends need to be set free. Friends we make along the way are not all meant to stay with us through all phases of our lives.
Amen! Sorry to hear about the loss of your friend, John! Posted by Lymetoo (Member # 743) on :
quote:Originally posted by slcd: [QB] That's what we're here for! To be the understanding people in your life! :-)
People don't understand what they've never experienced. .......... No experience...no understanding...
Amen to that too!!
Posted by momintexas (Member # 23391) on :
Keebler, you should write greeting cards. Seriously, you have a way with words.
Very well said.......your response made me feel better about a "friend" that I'm feeling bitter about. 2 birds, one stone.
John : I understand exactly what you are saying, sadly.
Posted by randibear (Member # 11290) on :
said it once, say it again. nobody knows about lyme and they just plain don't care.
![[Smile]](smile.gif)
MamaBear is right, those who truly care ask how they can help.![[Wink]](wink.gif)