posted
My family, particularly my husband, does not believe in chronic Lyme or that I really have it (despite 4 positive lines on a WB and positive PCR, and Lyme-typical reactions to abx).
Like most of the medical community to Lyme patients, I get huge skepticism and feedback that I just complain about a lot of ailments but am not really that sick. Stuff like, "Well, everyone is tired." Thankfully, I am seeing a LLMD and have another doctor who believes in what I'm experiencing.
I would love to hear how others handle these types of issues.
-------------------- We really know so little about the body and the microbiome. Posts: 261 | From Southern California | Registered: Jan 2011
| IP: Logged |
Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
quote:Originally posted by Keebler: - If someone does not "believe" the fact about my having a solid medical diagnosis such as lyme, I cut them loose.
Me, too.
I can't handle naysayers. It's as if they are minimizing my suffering.
It's the same thing as someone saying to somone with cancer that they don't belive in cancer.
You can bet your boots the person with cancer will nip that relationship in the bud.
I think a lot of it is people deny things like this because it's their way of getting out of helping. If they don't believe you, then they don't have to help you. And I personally believe it's because a) some people are all about themselves and not capable of compassion and b) they don't think something like this will ever happen to them, so the person who's sick must just be a freak not worth helping. Kind of a narcissitic thing.
It is unbelieveable to me how many times I read of spouses being unsupportive. Just boggles my mind.
Posts: 1142 | From South | Registered: Dec 2010
| IP: Logged |
posted
I just don't get it when people don't believe me. I'm not tolerant of it at all. I don't try to convince them. They are not my friend if they need proof that I'm not well (or in my case, wasn't well, as I am better).
When my mom had cancer, I did not make her PROVE it to me. Yet she never believed me about my Lyme. I cut myself off. I needed support, not to constantly defend myself.
If it were my husband, since you are kind of stuck with him, I would ask him why he doesn't believe you and go from there. What I said next would depend on his reason why.
If it's that "everyone is tired", I would say, "Yes, everyone gets tired. Everyone gets MORE tired when they get the flu or a bacterial infection. I am MORE tired because I have a bacterial infection that makes me feel like I have the flu. Yes, I agree that everyone gets tired, but I disagree that my fatigue is within the normal range of fatigue."
Then I would let it rest for a while so that he can fully process that information. Another day, I would try talking some more. If he's totally not receptive, I would take it very personally and I would tell him that.
In my mind, if you have positive testing, are seeing a doctor and are in treatment, what's not to believe? It's not like you're asking someone to believe in Santa Claus.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Tired is not a correct term for the kind of fatigue that comes with lyme. It's a bone crushing fatigue that is sheer pain, actually. Elevated cytokines, demyelination of nerves, mitochodria damage and the adrenal dysfunction also magnify that near paralytic fatigue by what seems like millions.
Add to that dealing with frequent inner ear/balance dysfunction that often goes along with lyme - and there is just no correct word for that kind of exhaustion. Nutritional deficiencies caused by lyme also complicate matters. And the list of fatigue causes goes on and on. But we need not figure out why every minute.
When you have the flu, do you say you are "tired" or "sick"? Usually, "sick" - so, with lyme, I suggest dropping the tired when we have to explain. "Simply unable to do that right now" covers a lot of territory.
I do recall when I first experienced failure of my legs - I was with my (then) husband in a mall and I started to cry because of the sudden crash and loss of neuro function. I had said "I'm just so tired" and couldn't help but cry. He dismissed it, saying, "well, being tired is no reason to cry."
I never again told him just how sick I was. I didn't have the words. He didn't have the ability to comprehend and I had no doctor who could do so either. It would be nearly twenty more years before lyme and other TBD came to light.
"Tired" and "Fatigue" just are not at all adequate terms to describe it. I stopped telling people I was too tired but just too sick, to be more accurate but also hoping they'd better understand. And that's when they really dropped like flies.
Lyme not only separates the "men from the boys" so to speak, it will show you just who are true and good friends. Friends, loved ones, want to learn more. -
[ 01-09-2011, 03:38 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Camp Other
Unregistered
posted
Me, I tell them that if they want to rifle through the stack of western blots and coinfection tests I have, they're welcome to. I make to move as if to take them out, and they back off, saying, "uh, that's okay... I believe you".
I don't know if they *really* believe me, or if it's more like they really rather be in denial.
I think a big part of it is that they don't understand how variable symptom presentation is in tickborne infections and also how quickly things can change with them. I also think that people who have not experienced chronic illness of any kind can't relate to the fact that fatigue is intimately tied to pain in many cases, and that one can be in tremendous pain without having to b**** all the time about it. After a while, pain just IS, and complaining about it continuing takes too much energy.
My fatigue is variable, as is my pain. Pain gets in the way of functionality first, then as time goes on, trying to function on whatever level I can leads to more fatigue. It all depends on what my most recent baseline is, too.
IP: Logged |
posted
I often wonder if others simply don't want to give up their expectations of life working out, and our lives working out -
this whole situation is an interruption of what they want to think about, which is normal living, and they're not ready to think it might not be that way -
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
I empathize with you! This has been my most pressing issue all of these years with chronic Lyme.......
I think it may be due to a lack of understanding about how serious and severe Lyme can be (after all, to some medical people it doesn't even exist),
as well as lack of public awareness (don't get me wrong, but there are pink ribbons everywhere, and even my can of Diet Coke has a red ribbon, but to find a Lyme ribbon is far and few),
plus, some of us have this disease with SO many symptoms, for such a long time, it wears family members out.
I'm not saying that's a good excuse --- I'm a medical person myself --- I'm just saying that if one has certain other diseases (cancer, MS, Parkinson's, diabetes, etc) there is a general sympathy and compassion for that patient that many of us with Lyme do not have.
I struggle with this every day: I have only 2 family members that actually talk to me.
My brother has a large family of children and grandchildren, I had not heard from him in 13 years.
In October, when I was nearly evicted from my apartment, he called me back. Twice. I told him of my Lyme (I have chronic), and he never called back.
None of his family has called.
My aunt is 83 years old; she lives with me. There are days when she is afraid I am going to die, there are days when she says "oh, knock it off".
Exactly what to knock off, I don't know. I do the shopping, cleaning, cooking; I walk everywhere since I have no car anymore.
Sorry about getting too personal. My point is, I think if I had gone to my family and the "friends" who no longer call and said "I have cancer", they would have lined up to help.
Many days I feel unwanted, uncared about, and somehow just a nuisance.
-------------------- The Bite: July 1995 Next 13 years: Treated for things I didn't have Symptom total: 45 1 faint Lyme IgM May 2000 5 More negative tests IGeneX says YES! 3/16/09 Finally feel human: 2012 Posts: 120 | From Plainsboro NJ | Registered: Feb 2007
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Let him read this if he doesn't think CLD is real.
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Smack them 'up side the head.'
-------------------- '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
| IP: Logged |
2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
I don't discuss it with them.
If I know they are nay-sayers, I mind my own business and do what I do.
My sister-in-law lives in North Carolina. She is so sick with a multitude of issues. But she's a know it all, and very pridefull.
I let her go to her hundreds of doctors and tests and even home0pathic christian gurus in Cali where she was sending biological fluids for analysis. The voodoo they sent back didn't touch it. Atleast the great Oz agrees that the moon flares things up.
So, I finally decided it was time to give her the best I had. I sent her the "Under My Skin" DVD. She didn't acknowlege she even got it. Several weeks later when I asked, all she said was that she did. Not a comment and no disk returned yet. It's been 2.5 months.
What the hell is she doin'. Sittin on it to incubate or maybe getting treatment with so little as a "boo" let alone a "thanks".
Ah, what the heck. She's ignorant.
Hang in there.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
| IP: Logged |
posted
2roads- she didnt watch it, ive seen this from family ive given the video to
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I've had the same experience with the DVD. Half the time people won't even watch it. I tell them "You're missing out, because not only is it a great documentary, but rather it plays like movie-mystery/conspiracy based on "many" true stories.
It's just a great film, period. Even if it wasn't about Lyme, and the topic were AIDS for example. It's just well made.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I am so sorry your husband is a non-believer!
Even though my husband believes I have decided to keep it a secret from friends and family. And alot of friends & family have had Lyme but their's was cured. Not sure why people don't believe in chronic Lyme. I do know of one neighbor who's son went through hell to get treated and cured. Took a long time.
Maybe it won't be chronic for you too much longer. Hang in there!
Posts: 70 | From NJ | Registered: Sep 2010
| IP: Logged |
posted
Thanks, everyone, for your feedback and advice. Much appreciated!
-------------------- We really know so little about the body and the microbiome. Posts: 261 | From Southern California | Registered: Jan 2011
| IP: Logged |
quote:Originally posted by Keebler: - "Well, everyone is tired" is an unacceptable comment and it is abusive, after having been informed that you have a solid diagnosis for life-threatening infection.-
this is such a great quote. well said keebler.
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
| IP: Logged |
2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
You're probably right Junkyard and Metallic.
What I can't figure out is why she is not mailing it back.
What up. I told her to return it when she is finished with it, as I wish to send it to others.
She is a selfish, stingy person, but generally not rude.
Common courtesy would be to send it back yesterday.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
| IP: Logged |
people dont care. they never did or never do. its human nature. people are into their own lives. i was that way. i cared when people got cancer but i didnt think about them all the time. i didnt think about the struggles they were going through.
people dont care. the sooner you learn you have to look out for yourself and take care of yourself the better off you will be. much easier to avoid disappointment when you have no expectations.
as far as people who dont believe, thats just a convenient excuse to be uninvolved without having to deal with the guilt of abandoning loved ones in time of great need. trust me i have first hand experince with that one.
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
| IP: Logged |
MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Turn their snow yellow!!!!!!
AAAOOOOOOOOOOOOOOOOOOO!!!!!
MADDOG
Posts: 3996 | From Ohio | Registered: Oct 2000
| IP: Logged |
quote:Originally posted by 365SunnyDays: My family, particularly my husband, does not believe in chronic Lyme or that I really have it (despite 4 positive lines on a WB and positive PCR, and Lyme-typical reactions to abx).
Like most of the medical community to Lyme patients, I get huge skepticism and feedback that I just complain about a lot of ailments but am not really that sick. Stuff like, "Well, everyone is tired." Thankfully, I am seeing a LLMD and have another doctor who believes in what I'm experiencing.
I would love to hear how others handle these types of issues.
Fortunately, I have a supportive family and supportive friends. They all know I am sick, and it's obvious to everyone that what I am doing is working. However, there were times they were less supportive.
When I was the most critically ill, my mom would drive me long distances to hospitals with a psychiatric unit. This did upset me. It wouldn't have upset me if my issues were psychiatric, but they weren't. There was no psychiatric medication that would work well at the time. Unfortunately, the only thing that helped were sedatives and other controlled substances. Strange enough, Not one psych evaluator thought I was psychiatric, and I've been interviewed by at least a few of them. They were the ones that recognized that something else was wrong with me while Doctor's and their egos would dismiss everything as "just anxiety" or whatever their diagnosis of the day happened to be.
I realized that my parents weren't trying to be mean to me, they just didn't know what to do; nor did I. They just didn't get it at the time.
I actually remember getting more respect after my family watched "Under Our Skin". I did not ask anyone to watch it with me. I simply ordered the DVD online with my own money, popped the DVD in the player, and suddenly my whole family was watching it with me. I have a feeling that if I asked my family to watch it with me, nobody would have watched it. Like a good movie or show, they just all eventually gravitated to the television.
As far as egotistical doctors - ignore them and move on to another if needed. Don't let them hurt you. For an example, if you are going to a cardiologist for heart concerns, and if they start lecturing to you about something else that doesn't have anything to do with your heart concerns, leave. Their not worth it.
In fact, it took me a while to find an oral surgeon that I trusted. Other dentists and surgeons didn't seem to take health concerns seriously. The one I found had CFS for 2.5 years (and recovered), and he took all my concerns seriously and was extremely compassionate, and addressed all my concerns. Sometimes the doctor has to live on the other side of the bed to "get it".
I am a male, but I know the medical community and people often judge women with problems as "complainers" rather than taking their complaints seriously. I think this is very unfortunate. I used to be one that would make fun of conditions such as fibromyalgia, but I know I would never do that again. I didn't get it.
As far as your husband, I don't know what to say. He obviously doesn't get it. Hopefully he comes around and supports you. As you already know, chronic Lyme is controversial, so I can understand his skepticism about such a diagnosis, but does he at least believe you are sick? Is he empathetic at all? Does he help you in times of need? I think that's most important.
None of us are perfect, but at the very least, he could recognize that you are ill, and do what he can to help you and comfort you.
I know there is people here that disagree with me, but trying to force someone to believe a label will turn out to be counterproductive. It doesn't work. However, in my experience, giving it time might work.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
quote:Originally posted by kday: [As far as your husband, I don't know what to say. He obviously doesn't get it. Hopefully he comes around and supports you. As you already know, chronic Lyme is controversial, so I can understand his skepticism about such a diagnosis, but does he at least believe you are sick? Is he empathetic at all? Does he help you in times of need? I think that's most important.
i just have a hard time understanding how a spouse could not believe. my idea of marriage is the two of you vs the world. you knew the person when you were married, you knew they were sane before, now something is seriously wrong.
if you wife was never the type of person to display symptoms like this before, and id assume thats the case since you married her, then why out of the clear blue would she be doing this if there wasnt something horribly wrong?
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
| IP: Logged |
Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
[QUOTE]Originally posted by JunkYardWily:
people dont care. they never did or never do. its human nature. people are into their own lives. i was that way. i cared when people got cancer but i didnt think about them all the time. i didnt think about the struggles they were going through.
This is very true.
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
| IP: Logged |
onbam
Unregistered
posted
I show documentation, preferably from the people who are now saying it doesn't exist. Lymecryme.com has lots.
IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
"I show documentation"
onbam - You are a delight, and I don't mean that sarcastically.
You are just a freakin' delight, and this board would not be the same without you.
And all the rest of you are crazy smart and insightful, as well.
posted
My 10 year old is sick with neuro lyme and the things people say are disgusting. "We have kids with cancer that are able to come to school so why can't you?" "Exactly what are your symptoms anyway" People need education. When I get better someday like you all we can educate people. I'm a nurse so maybe I can. Meanwhile realize that you are not alone in this horrific nightmare.I don't mean to be a downer but I am fighting against my ex and dcf and the schools while I am sick too. I know how hard it is people don't understand AT ALL.
Posts: 61 | From wilton | Registered: Mar 2010
| IP: Logged |
jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
"We have kids with cancer that are able to come to school so why can't you?" "Exactly what are your symptoms anyway"
That is so cold hearted. Sorry you have to deal with this.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
| IP: Logged |
2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
OptiMisTick,
You have to enlighten me.
Why is that?
I find her behavior very odd. Why will I not get it back unless I mail an envelope to her. I totally agree though, because it is not coming back.
She's not an irresponsible person.
Is it because she doesn't want me to have it?
I told her to send it back when I sent it, so I can't imagine she pitched it.
Is it because she doesn't care enough to watch it, let alone send it back?
What is your reasoning behind your comment, because I cannot relate to what she is doing and I need some form of explanation.
So confused-
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
| IP: Logged |
posted
Maybe people just don't understand. How about explaining it - it's a spiral bacteria and it does XYZ in our bodies, causing us these symptoms, and requiring all kinds of treatment, and impacting us in these ways, etc.
Plus more possible infections that affect red blood cells, and immune cells, etc.
Sometimes I just get mad and don't shut up and demand that they listen to me, because this is real, and out there for anyone unlucky enough to be in its path.
It's a particular kind of anger, though. It might sound like it's about me in the beginning, but I'm really mad for everyone's sake, that anyone can be vulnerable, and I'm mad at them for not hearing me, like "This is for you too!"
For example, I learned recently that I could talk with doctors on a personal level, as in YOU, YOUR family, YOUR friends, etc can get this. That's sinking in more.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Thanks OptiMisTick,
I agree that there must be some past grudge.
Not sure what I ever did to her, but I think it's more the circumstances in her life that she links me to. Her Mother stole her away from her brothers, one of which I married, and took her south to live a messed up life, as the mother was too busy with men then mothering.
Anyway, I'm sure she also mocked me from years ago when I once mentioned we were on meds, as she vehemently disagreed with me, .and when she came with her family to visit others nearby and I tick-checked her daughter. She never did send her daughter my way to visit her cousin as they got older. Her daughter just went up north around Connecticut to college. I told her to be careful of Lyme. Her daughter's comment to me was how she remembered visiting and getting tick-checked. I was attempting to save her daughter, as well as my home from a tick.
So, if she remembers shunning me all these years, and now has to admit I might be right, that's a lot of attitude and neglect for fostering relationships she'd have to sort through.
Well, I will send the envelope. I will wait a few more weeks first. Hopefully, she will just send it back and we forget I sent it to begin with. I do feel like she is intentionally holding out on me for some retribution.
I guess she will never be well. I know lyme is affecting her brain. She has very neuro-lyme, vision, numbness in half her body, headaches plus all the pain, tumor growths as well...real bizarre.
I did what I could-
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
| 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!
![[loco]](graemlins/loco.gif)
![[shake]](graemlins/shake.gif)
Printer-friendly view of this topic