posted
Since coming down with this disease and all that goes with it, just about everyone I know is treating me like a leper.
It's really weird how people now avoid me, don't invite us to things anymore, even if I feel like it. It's like we have fallen out of favor with everyone. It seems like they take it personal when I got sick.
I can't believe this, it's so heartbreaking. I'm not only sick, but an outcast too. My family and inlaws pretty insensitive too. How do you guys deal with this?
-------------------- "Sometimes you're the windshield; sometimes you're the bug." Mark Knopfler Posts: 111 | From East of Eden | Registered: Mar 2012
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posted
My family won't talk to me now that my ALS diagnosis has been changed to lyme! You would think they'd be happy for me but instead they're mad that they helped me out for 2 years. Good God, I'm still sick and can barely walk. They all think lyme can be cured with a few weeks of abx.
I'm so tired of being hurt and alone on holidays. They even leave my kids out of things.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
You will find out who you're friends are real fast
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Yep, I gave a baby shower to friends. Then I got diagnosed. They had the baby and I never saw her.
I think people believe we will sneeze on them and infect them, or they just don't believe .
I have learned a lot. Try to find other things to plan on holidays or birthdays, etc.
My friend list zipped way down. I learned to ask neighbors and even acquaintances for help. I hated asking. But, it has brought new friends and I have help.
You will learn to work around it. It will hurt, but you will find new joys. You have to look for them.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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posted
One way I deal with it is give people some information about what it is and how it operates, so they can understand it better and what it does to us.
I also switch conversation to "and you could get it too and here's what you need to know" and in that way, make a bridge to them as well.
I also acknowledge how it changes us such that major management needs to happen, and I acknowledge their feelings about that, that we are not the same people they grew up with, or easy to be with like other healthy people in their lives.
I let them know my specific disability needs. And I also tell them that we who are ill with Lyme and co's are all different, and that each person is going to have their specific needs.
Frankly, I don't have much control over the situation alot of the time, and have to play it by ear, and they need to know that's the situation.
If they cannot hear any of this, then I think there's not much point in hanging out with them or trying to.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Thanks for the support. It is very painful, both emotionally and physically, but I guess we know where we stand.
-------------------- "Sometimes you're the windshield; sometimes you're the bug." Mark Knopfler Posts: 111 | From East of Eden | Registered: Mar 2012
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
we all stand together here. You can always find love and support cause nobody understands like another person who has lyme
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I know what you're talking about, it's sucks but you know what? It often takes a tragedy or unfortunate situation for people to show their true colors. When one of my best friends ditched me, I was heartbroken. Now my boyfriend has up and stopped talking to me, and I know it's because he's sick and tired of all this. Whatever. It's THEIR loss. We are stronger people for going through such a bad thing and you know what else, you will find other people who will be supportive about it. I would rather have people who are okay with all this instead of people who "try" to deal with it/us, like my boyfriend did. The fake support can be worse, it's hard to explain.
Get out there and try to meet new people, even if they have nothing to do with lyme. If you think it'd help, be up front with them about your lyme and how it affects you. Gradually teach them about it if they are okay with it or even if they have any interest. I've yet to really personally connect with anyone who also has lyme (although I do hope to) but the new people I'm letting into my life are those only who are okay with it at a minimum. Know what you need from other people, what you can and cannot tolerate.
Going through tough stuff like this makes us all stronger people. We don't deserve to waste our own effort and time on people who are going to be cruel, ditch us, or worse.
For me, the tough part isn't telling people, it's making them realize that this is not a joke and is quite serious. I had one person joke about it constantly and I eventually got fed up, told them off and just stopped talking to them. It's BS. If people can't be respectful they don't deserve your time or attention. This may be a harsh way to look at things but I'm someone who has gotten a lot of backlash from people who are cruel about my health.
Posts: 7 | From CT | Registered: May 2012
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posted
"Fake support" sucks. I know what you mean Desmo. I"d rather be alone than have it.
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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posted
I wish I had never gone public with this. It is a curse and has ruined my whole life. If I had it to do over again I would just keep it to myself. Thanks again for all the responses. It is so nice to be able to come here and talk to people who get it.
-------------------- "Sometimes you're the windshield; sometimes you're the bug." Mark Knopfler Posts: 111 | From East of Eden | Registered: Mar 2012
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posted
I don't know, Homesick - maybe there's other experiments you could try with folks, like try letting them know how you feel, how it hurts your feelings when they treat you like this, how you'd like to continue to be able to see them and do things with them, but at your own pace. We're still human, even though we're ill.
Posts: 13116 | From San Francisco | Registered: May 2006
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Maybe you have a point, I just want to give up, but maybe I should give it a try. Maybe they just don't understand. It's just hard to believe people can be so clueless.
Do they think we are contagious or have the plague or something? Seriously - that's how they are acting. My sister in law is in the medical field, so she is the worst of all. Thinks I'm crazy as a loon.
-------------------- "Sometimes you're the windshield; sometimes you're the bug." Mark Knopfler Posts: 111 | From East of Eden | Registered: Mar 2012
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posted
A good friend of mine , who is a nurse, hasn't talke to me since I told her I have lyme. I fgured she would be happy that I found out what was wrong with me and its been 20 years of misdiagnosis.
All she said was, "Oh, well you will just go on antibiotics for a few weeks."
Well 4 pills and 14 supplements. And in 2 months IV...I guess she was right..lol
I think that the people who are trained in medicine are the worst to understand..unless they have gotten lyme or are lyme literate. They have been taught to follow the rules for diseases and don't look outside the box.
As with family, mine was not at all suppportive when I got the true diagnosis last November. I was an MS misdiagnosis and now they don't even ask how I am. I just don't give any info out...they don't seem interested in knowing.
I have become numb to the fact that they don't seem interested ...and its better that way cause the stress of worrying about it was making me sicker.
Rememer its their loss if you are not in their lives......
So glad to hear that you don't have ALS...stay strong and worry about your own health and well being...keep focused on getting well.
Your welcome to come to our house for holidays...we just stay home and enjoy our children....less stressful that way and loving.
Your not alone...take care and God bless
-------------------- Angelp Posts: 78 | From connecticut | Registered: Mar 2012
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posted
Yep. Those people in the medical field are the worst. They are very arrogant and think they know everything. Their whole demeanor changes when they are around us. It's like they get insulted because we are sick. Maybe we should apologize in advance to these people for being sick:
"Let me just begin this converstion by saying, I am SOOOO sorry for ruining your day by being sick with this fake disease that does not exist!"
angelp,
I agree. Aren't some of the mds that treat this doing it because they have had it themselves?
2young2die,
My sister in law is an expert in everything, not just lyme. Just ask her and she will tell you. We are so glad we have someone like her to keep us morons in line.
-------------------- "Sometimes you're the windshield; sometimes you're the bug." Mark Knopfler Posts: 111 | From East of Eden | Registered: Mar 2012
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posted
My PCP did have Lyme, but I just saw a true LLMD.
My PCP was only good for a recent bite and mine is a misdiagnosed for 20 or more years.
The one good thing with the PCP is that she understood how I was feeling and cared, but eventually realized I was way out of her knowledge for treating lyme.
-------------------- Angelp Posts: 78 | From connecticut | Registered: Mar 2012
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
oh i know exactly what you mean. my sister is a radiologist and my two aunts, one works with disabled children and the other is a trauma room nurse.
now no offense cause i know some people here are in the medical field, but man, they are the worst.
my sister has called me everything in the book and then some, hypochrondriac being the good one.
i get the ole "oh god, here she goes again with the lyme thing. would you please just shut up"...
so now i never mention it at all. that's just the way we have to do it.
if we had cancer it would be different you better believe it would, but we don't.
we have something they can't see, like a cast or bruise or break..so to them it doesn't exist.
like fibro -- my husband said "that's a woman's excuse to try to get attention"..yeah right. and my sister said "omg, we get that in the hospital all the time..what a joke..fibro..yeah right, lazy is what they are.."
so yeah i know all about trying to talk to family members in the medical field...
and the one person (she's now dead), said "you sure take a lot of pills for somebody who's not sick"....
makes me want to hit them, really.. i mean it. just haul off and knock their ignorant spiteful mean heads off...
well at least i'd feel better....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Oops, I hope I didn't offend any of the medical people on the site. Sorry to all of you.
I guess I shouldn't generalize.
But my sister in law is still a pain in the butt.
-------------------- "Sometimes you're the windshield; sometimes you're the bug." Mark Knopfler Posts: 111 | From East of Eden | Registered: Mar 2012
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
yeah I don't want to insult Anyone either and my sister IS a knowitall.....lol
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Hmmm, I just realized that my sister (who has ignored my illness and said she never really thought I had ALS) is a nurse too. Maybe that is part of the problem?
It still hurts, tho. Some people go to such lengths to find their birth families if they are adopted and here I have a full blood sister who doesn't care if I live or die. so cold.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Well, I am a nurse, and guess what? My own peers in the medical field have treated me worse. The arrogance and ignorance is unbelievable!!
I have learned to not mention I am a professional anymore.
May I take this opportunity to appologize to anyone here that has been mistreated by the medical community. They ought to be ashamed!
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
ive been dealing with lyme for over 30 yrs -i lost friends, family thinks im nuts, my kids forbid me to use the "L" word or they leave...they rarely come anyway
im a bit ashamed to say i have learned it is easier to blame my disabilities on my osteo arthritis and 2 head closed injuries
llmds and neurols agree it is is hard maybe impossible to sort out what is causing what symptoms...but i still have so many wierd ones i know lyme is still a part of it
and even the ortho said it was crazy for a 30 yo to get osteo arthritis...but the xrays dont lie. no cartilage. Bb eats cartilage, right
anyway-you gotta do what you gotta do. and believe it or not there are good things that lyme has brought into my life.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
so sad but true, I found a new response to "how are you" ? "You wouldn't Understand" ! stops them dead..
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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posted
I stick it to the medical people now - I give them brochures, discuss the science, keep it medical, give 'em more facts, and I don't shut up till they start to ask me some questions, and then we discuss it medically until it starts to get through their heads how this works in the body. Harrumph!
Posts: 13116 | From San Francisco | Registered: May 2006
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Robin,
Have you been able to convince very many? I admire your tenacity.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
Yep, I found out who my real friends and family were too. I did get the cold shoulder from the mainstream medical professional, but have done beter now that I have alternative doctors that believe me. That seems more important to me than the friends and family. I do have two wonderful friends that will support me to the end. I also have a hubby that doesn't know what to think of the whole thing, but is supportive. It is a shame that we are not normal, but I figured life goes on and I needed to get tough and I did. The best thing I have done is to support others that are worse off than I am with this disease. I am a heck of a researcher and have connected Lyme people with the right sources. That has been rewarding to me and I feel productive. Good luck all, hope we all find a cure.
Posts: 620 | From Ks | Registered: Oct 2011
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
I was so shocked that the people I went out of my way to help (which i thoroughly enjoyed) would treat me so badly when I was diagnosed with CFS, which turned out to be Lyme.
I was always very diplomatic and tried my best to make all relationships work.
Now, I have been shell-shocked by their lack of concern and alienation, and am still deciding on how to handle it all.
For now, I am just honest about what is going on with me. This is not something I can hide because it has affected my life to the point that I can't be depended on because I never know how I will feel from one day to the next.
So, instead of being so diplomatic, I just say what I think about most things and am honest about my health. I figure my true friends won't care.
Posts: 1358 | From Midwest | Registered: Apr 2009
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Give people the web address of the Dr. Phil show that dealt with Lyme. (Don't know it off hand.) But if people could watch the "uncensored" version, it would carry a lot of weight.
Then give them access to "Under Our Skin", after they have watched Dr. Phil, as he makes reference to this documentary on his Lyme discussion show.
I can't thank him enough for helping us in this way.
Posts: 1358 | From Midwest | Registered: Apr 2009
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posted
rivendell, Shell-shocked is a good way to describe it. I was caught completely off guard by all of this stuff.
I guess I never thought people would turn on you because you are sick? What is it about lyme anyway? I have friends with cancer and everyone is lining up to help them.
I don't mean everyone has to get in line to help me, but I would like a little commom consideration.
I am so glad Dr Phil did a show on lyme. Hopefully he will do a follow up sometime in the future.
-------------------- "Sometimes you're the windshield; sometimes you're the bug." Mark Knopfler Posts: 111 | From East of Eden | Registered: Mar 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
im not sure if this belongs here but wonder how many have this experience: the family who think i am nuts for believing i have lyme have so many symptoms-each could be a lyme sx but they give it a different name and treat it with a bunch of meds
so i just smile and nod my head as they describe their illnesses...knowing i cant say it might be lyme...because they will leave...convinced i really am crazy
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Another thing that gets under my skin is those people who become my best friend when they have something to sell.
Off-the-chart expensive kitchen stuff, jewelry, baskets, you name it. If your not interested or don't go to their "parties" your become an outcast again.
I know one woman who literally will not speak to me on the street but has the nerve to send me invitaions to her sales events.
-------------------- "Sometimes you're the windshield; sometimes you're the bug." Mark Knopfler Posts: 111 | From East of Eden | Registered: Mar 2012
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posted
The problem I have is that I have lost a lot of weight and used to be very heavy. I now weigh 135 lbs and look great (so they tell me). I can feel sicker than a dog and they say "wow, look at you, you look great" I want to say, "oh yeah, I feel like @#$%, but I don't. I just politely thank them and move on. It is great to have a nice body shape, but honestly, I just want my health back.
Posts: 620 | From Ks | Registered: Oct 2011
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