How do you get people to understand that physically you can't do many things you used to do & love? It's not that you don't WANT to. It because Lyme has stolen the ability to do it.
I'm lamenting the fact that I cannot physically go places and do things with friends and family. Family & friends get frustrated that you can't do this, eat that or go there.
I also don't like it when they compare Lyme to their colds/flues. I have one person who said, "I can't believe how sick so&so was with an ear infection. Yet, totally disount the illness of a Lyme patient who was in the hospital for a week as if it were nothing!
Why don't they get it??? Lyme is horrible! It literally destroys you from the inside out.
It almost seems as if a person has to die before they understand. Then they'll say, "Oh, I guess s/he really was sick."
I feel like I have to either totally not say anything or somehow find a way to keep doing things. What do you do? Try to go somewhere and then crash later?
Where is the support? The understanding?
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
| IP: Logged |
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Yes, this is just the problem that I have run into.
I have cut back on the number of activiites I do, and take care of the essentials first.
I guess if I am only now beginning to understand tick borne illnesses after months of reading, and my own symptoms, it is hard for others to understand!
I think I will also use lymedad's letter (see an earlier thread) to families where needed.
Good luck and take care!
Posts: 2557 | From home | Registered: Aug 2006
| IP: Logged |
posted
How do you get other people to understand when you really dont understand yourself.
I hate this. I am better but people see me at Walmart and assume I am well. They dont know that I will be in bed in pain the rest of the day for getting a few groceries.
Sometimes you just wonder if this is life. Which amounts to no life at all really. I really want to get well and help other people who have Lyme disease. ID doc in my area think it does not exist. Wow, everyone I know knows someone who has it or had it and their stories are not fun to listen to. Posts: 347 | From WV | Registered: Jan 2007
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I have stopped wasting my energy on trying to help others understand.
I do think the articles and stories in the local newspapers, on discovery channel, and if we can get the documentary out help.
I'd like to see Larry King do a lyme panel like he did for MS and other conditions.
I'd like to see the media do more on the subject in general.
May is Lyme Disease awareness month. Let's get busy. If we start now...perhaps will have something for May 2008 HA!
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
Yes, yes, you get it!!! It's so refreshing to talk to someone who understands. How desperately I want my friends & family to know & understand. Maybe they could get Lyme for a day and then they'd know.
Where is LymeDad's letter? or what's the post name? Is it "Letter to families? I'll have to look for it. Is it on the medical discussion group?
Life is passing us by and that's especially hard! I miss not being there for my kids & the milestones in their lives.
It really is weird that the ID docs say Chronic Lyme doesn't exist, yet so many people have it. I wish the ID docs would all get Lyme for a year (the really bad ID ducks for longer) and then they'd know what it feels like and how awful the medical system is. Maybe then we'd see some change. Something has to change. It's one thing to suffer with a horrible disease & yet another to be dismissed. No one would do this to a cancer patient.
Is there a book to give to family/friends to help them understand the realities of Lyme?
I'm just so tired of it all. Tired of the disease, tired of the attitudes, tired of the politics, tired of good LLMD's being taken down. If people listened to them, we'd be much further along.
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
| IP: Logged |
posted
Kayda, we're still dealing with stand-down politics. If doctors were willing to acknowledge what is happening, we wouldn't have to do all the work ourselves.
That's why I agree with Kam, re getting the May articles out(I say keep going: June awareness, July awareness, etc!) -- the more word that gets out, the better. We need to build more awareness of the problem. Newspapers are one good way to get word out to a lot of people.
There's a lot of people in my life who don't understand. I didn't either, for a very long time.
Possibly trying to see it from their perspective and acknowledge that first?
As in, "I know it's hard to understand this. I didn't either, and it's taken me a while to learn about what was happening. But it's very real, and please have the patience to come to an understanding with me about what this is all about. I can give you some brochures and some web sites to look at, and besides, did you know that you are now at risk and your animals too?"
I switch to that last statemnent in order to sincerely alarm them enough to start asking me for some info. Generally works!
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
Thanks for such a good way to approach family/friends. Sometimes what happens is they seem to understand for a little while and then they have the attitude of: "What? You're still sick?" or "The dr. must not think you have Lyme, if you're not on medicine." (I have several allergies to meds & can't take them, but people don't get that either.
I've got to stop being so emotional about this. Sometimes, it just gets to me.
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Basically I dont need people to understand what I am actually going through just how it effects my life...
meaning I need people to aknowledge the long list of cant's lyme disease has forced on me and
for them to believe that I do what I can (and sometimes more than I should)
If people get mad and make my life worse cuz of the can't I have to try to cope with, then I don't need them I don't want them...
good bye good riddance.
If people want to understand what the symptoms are like I try to explain in terms they may understand -
(Like my fatigue is like just coming out of anesthesia except I am aware that my balance is off that my speech is impaired etc. )
I dont really think that I have ever really had anyone understand the gravity of it and I am grateful for that because I think the only way to really understand is to go through it -
all the people left in my life are understanding and always there even if they don't quite grasp the detail they get the big picture that everything is difficult for me
So it would break my heart if they had to go through all the suffering and struggle I have had to
and I know it would break their hearts if they REALLY understood how bad things have been for me over the years.
I know the people left (all family members including one fat cat will be there for me no matter what this disease or the fates have planned for me.
THis is just how I have dealt with it and what works for me
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Kayda, There are just some things a person can not understand, even if they'd like to.
And most people don't want to listen to a litany of complaints.
When someone my sister knew died of a chronic illness, one of her "friends" said, "She was always such a hypochondriac."
For support, try posting at LymeNet. Hah, I know this reply doesn't sound very supportive. Guess I'm getting a little jaded at the world's reactions to us.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
I think on my tombstone it's gonna read: "See I Told Ya I Was Sick" ;-)
People seem to get impatient with this disease & I do, too. I want it to be all behind me, done, gone forever. But, I guess it's going to take a while for that to happen.
I liked the description of fatigue being similar to coming out of anesthesia. That is so accurate for me, too. I guess we expect too much for friends & family to really understand. Even the drs. who are supposed to, don't.
I am thankful for LymeNet & everyone here. It really helps to be able to vent & know I"m not alone.
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
| IP: Logged |
posted
I totally understand where you are coming from.
I've been sick for almost 4 years, but I still haven't been diagnosed by a doctor, they just keep telling me that it can't be Lyme's, because I don't remember having a "rash".
But everything that they have tested me for has come back negative and the three lymes tests have all came back weird. First one was negative, second was, unconclusive, and third was maybe.
So I understand where you are coming from. I have three children who get very angry with me because I forget things and can't remember things that I've said or done. They are getting better at reminding me, but I can't blame then for getting angry, because I get angry with me!!
My family which is very large thinks that I'm just lazy because I don't attend all family functions and parties, because if it's a bad day I just can't or don't have the energy to go.
I have been forced out of my career and unable to work since I've became ill, but my family (not husband and kid's) thinks that I'm just faking it and trying to get attention, because I'm to young to be in this much pain and be this tired all the time. And trying to explain what is going on with me is hard, because they all think that it's in my head.
But I keep reminding myself that one day I will get diagonsed and than I will show them all and say, "REMEMBER, when I was sick and unable to attend certain things, I had a reason and I wasn't faking it!" One day this will happen, I hope anyways:)
But just keep your head up, until they understand that this Lyme's is a DISEASE and that it does cripple you on the inside and takes your life away they will never understand.
So keep your head up, I keep telling myself things will get better and they will. I wake up every day praying and hoping that this is the day that I'll get diagnosed and my treatment can start and than I can show them and make them eat their own words!
If the family won't come to you and be supportive, come to this wonderful site and talk to your extended family, because we always understand and know exactly how and why you feel the way you do!
[ 24. April 2007, 09:49 AM: Message edited by: Mom of 3 ]
-------------------- Best Friends Are The Siblings God Forgot To Give Us!! Posts: 24 | From Wabasha, Minnesota | Registered: Jul 2006
| IP: Logged |
posted
Carisa -- could you break up your text into 2 or 3 line entries?
I think it's time for our families to know this is a real disease. This is not our fault!!! Maybe get them some info, like thePublic Health Alert paper can be read here online, the Lymetimes quarterly on Lyme basics, some brochures?
Time to be a broken record: I have a real disease...With a real research center about to open this week at Columbia University!
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Sorry about the text. I'll remember that! Thanks
-------------------- Best Friends Are The Siblings God Forgot To Give Us!! Posts: 24 | From Wabasha, Minnesota | Registered: Jul 2006
| IP: Logged |
bettyg
Unregistered
posted
carisa,
here's how you can go BACK to your long, solid post paragraph and help us neuro lymies be able to read and comprehend what you typed ok!
go to your long post, then click on PENCIL ICON which opens up your text area.
now break it up into short paragraphs and hit the enter bar TWICE AFTER EACH PARAGRAPH so our lyme minds can comprehend this.
keep this up until you get all done, then click the EDIT SEND. thanks for helping us all out. please keep these instructions handy as a friendly reminder ok.
IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[bonk]](graemlins/bonk.gif)
![[Smile]](smile.gif)
will be there for me no matter what this disease or the fates have planned for me.![[group hug]](graemlins/grouphug.gif)
![[spinning smile]](graemlins/spinsmile.gif)
![[Big Grin]](biggrin.gif)
![[hi]](graemlins/hi.gif)
![[Wink]](wink.gif)
please keep these instructions handy as a friendly reminder ok. ![[kiss]](graemlins/kissing.gif)
Printer-friendly view of this topic