One of the things that I find hardest about Lyme disease, amongst the many things that I find difficult to deal with, is that fact that approximately 50% of people doubt my diagnosis, think my symptoms are pyschosomatic, or that Lyme disease is an easily treated illness with minimal side effects.
The person who has the worst doubt or acceptance of my illness with Lyme Disease is my husband.
During the first week or two after my diagnosis, he backed off and gave me some space realizing that I was actually in a lot a pain.
He thought I was intentionally trying to ruin his Thanksgiving and Christmas holidays and wanted me to knock off the excuses!!
With the holidays being the nature of a family getting closer, it was a difficult time for me to get through. It didn't help with him constantly giving me the silent evil eye.
AFter the holidays were over, he expected me to pick it up, even after only being on antibiotics for 3 or 4 weeks.
It's already 2 months since I was finally diagnosed with lyme and I hardly feel much better yet, other than the pain moving from one area to another, where most of the pain is currently in my face (neck, jaws, ears, throat and headaches from it all) besides lesser pains in my hips and knees.
The ones who seem to believe me the most are the ones living farther away, such as my family who live 10 hours or more away from me.
My husband actually acts like he hates me and punishes me for having lyme, like I asked for it. Duh!! When I need more help from him, he turns around and give me more work to do instead.
It really hurts when the person closest to you doesn't accept it and rubs it back in your face.
Posts: 90 | From Maryland | Registered: Jan 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Moose my mom is a lot like your husband ....rolling her eyes.......pushing me.
it is tough.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
Not only that, but some people I know believe I have Lyme but doubt my treatment! I know several people who think I should using a more non-antibiotic approach and give me a hard time about it.
Never mind that they have not done any research into the matter and have no idea what they are talking about.
Or how about those people who believe I have Lyme, but can't understand that I'm as sick as I am. Especially since I "look so good."
posted
Hey Moose I had a similar response from my husband when I was first diagnosed in Nov.I felt like I was dealing with it all alone. He said it was the topic of every conversation and maybe I should get more opinions from drs before settingmy heart on lyme.
Well let me tell you I never experienced lyme rage like I did then!He even took me to the ER on New Years Eve and condicendingly asked the dr if my "lyme meds" could be causing my hands to not function properly. They told us I had carpal tunnel.........Oh ya,whatever I said!
Finally he went to my 3rd llmd appt and asked the dr what was wrong with me. My llmd point blank (I think he sensed hubby's disbelief) told him,"She has lyme and now that we know that I can get her better." That was the turning point for me,ever since that day he never has doubted me again.
Has he ever gone to one of your llmd visits and gone in the examining room with you? Maybe it would help if he could ask the llmd questions.
As far as other people I try and educate who I can to spread the word, those who care not to or choose not to believe me I pray for them!
-------------------- I'm gonna get that lyme !!! Posts: 61 | From Erie, PA | Registered: Dec 2005
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posted
I am not happy that other people are experiencing the same thing, but in a way it makes me feel good to know that I am not alone.
It must be very hard to have a significant other doubt you to the extent that your husband does Moose.
I had to laugh at people pushing you to work out or get out and about a little more cantgiveupyet - I get that all the time. Before I had Lyme disease I played tennis or squash 1 to 2x a week, went to the gym 4 days a week and practiced yoga at home. I also dragon boat raced and rode my bike everywhere. I don't know why people think I just decided to give up those activities one day just for the hell of it.
posted
I was at my worst Thanksgiving 04. Thankfully I found an LLMD a few weeks later.
At Thanksgiving Dinner I did not have enough energy to sit up through the whole meal. I had to take several breaks to lay flat on the sofa. I was obviously in great pain. My memory was gonzo and I had to keep asking the same questions. I looked dreadful.
My mother (who hadn't seen me in a while) acted like absolutely nothing was wrong. She ignored the whole Lyme thing completely! Meanwhile my sister was so alarmed at how sick I was she began calling regularly to check up on me. She has been very supportive although recently suggested that I should make sure I don't have some other dread disease. I reassured her that I'm quite sure I have Lyme.
A few weeks after the Thanksgiving incident my mother called and chirped out cheerfully: so whats new and exciting with you? I said "I can't do anything, I'm really sick and I can barely work". She asked what that was from, duh!!! I said "I HAVE LYME DISEASE" and she replied "oh I thought you'd be done with that by now".
My mother is still in denial so I don't bother to bring up the subject. Fortunately I don't see her often. It would be really hard to deal with denial every day.
I come to LymeNet everyday to be around people who really understand. Fortunately my friends have been great during this whole mess but I don't think anyone who hasn't been through it can really understand what this disease does. hats
Posts: 956 | From MA | Registered: Nov 2004
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Thank God for lymenet
I do know why many of my friends and family take the road to de-nile.
It is too painful for them to comprehend that I have chronic lyme.
It scares the h@@l out of them.
They would rather not talk about it. Alot of my loved ones have a don't ask don't tell policy. And honestly it is easyier that way .Because I don't have the energy anymore to explain and defend myself.
And I now know,if they don't actually have chronic lyme there is no way to explain this so they can understand. specially when I don't look sick,like an aids or cancer patient.
I am at a point now where I really don't care most of the time.
It becomes tricky though when I have to begg off engagements, because I am not up to things.
But sometimes I get lonely for someone to understand. Thank God for lymenet.
LOL
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Well, I've got everyone pretty much TRAINED.
They do ask me how I'm feeling.
Or better yet, they don't need to ask. They can tell by looking. Scrunched eyes, phone turned low, flinching from noise, blank look.
"Bad brain day?"
"Yup."
Slack gets picked up, noise levels to a dull roar. Coworkers make concerted effort to stop all talking at once.
"Bad brain" periods run from a coupla weeks to a month long, then I am more or less OK, for however long. Soon, maybe, they won't keep coming back.
I have noted much interest and curiousity about Lyme, but am happy to report that disbelief has come only from a few stupid ducks.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I've gotten mixed results with people.
It was worse for me before I was actually dx. Then, I was dragging myself around, trying to piece together some sort of a life but letting too many things slide.
I don't think anyone really understood that.
Once I was dx, my SO especially never once doubted how sick I was and has always been there, every minute and every step of the way.
My Mom and several of my oldest friends have also been amazing. My Mom's read everything I've sent her (deluged the poor woman) and my friends listen to me drone on and on and on about the injustices of this disease.
My in-laws are...well, I'm not sure they know what to think. They're wary of me and have stopped asking me how I'm doing. I think they just want it all to be over. I have two people I thought were good friends who have turned away completely. As if they're angry wtih me.
I wish I could say it doesn't bother me, but that would be a lie.
I keep talking aobut this, though, because I don't want anyone else to ever be caught unaware with Lyme, like I was.
Moose, I'm so sorry your husband doesn't get it. That's gotta be really hard.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
Right on Gwenb! Nobody, precisely nobody, knows what Lyme disease can do to a person. When people ask, I just say I have an infection. A bit like the flu, but worse.
Very few people care to listen beyond that. My closest friends and family are good though. But I don�t think they do understand what is going on with me and that I have "lost control" of it.
Even harder for them to comprehend that tests might come out neg and that doesn�t rule out Lyme. And that the docs don�t know what they are talking about, and it is a fight to get the right treatment etc.
Norway has a reputation of having a good health-care-system. But when it comes to Lyme...it is terrible. And for some that is not possible to comprehend.
Having Lyme is tiresome indeed. Posts: 155 | From Norway | Registered: Jan 2006
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BostonLyme2005
Unregistered
posted
Hi!
Lyme Sucks! Need I say more? I try to get rest where I can, sometimes I get some bits of energy.
I find myself trying to get out of work, walking less sometimes, most times I do try to walk down the stairs, but not up if I dont have to.
Those who are not ill with Lyme will never understand until that dreadful day a tick decides to infect them with this happy juice!
My apt. is a mess, sometimes too lazy to clean it, sometimes too depressed....
I find it does help to talk with people and be doing something that makes you feel good....
The worst must be when a spouse is not understanding....
I have been ill for 18 months and it will take time for me to recover....
Time......Time.....MMMMMMM....Yes, Time....We seem to have a lot of that on supply....
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My husband and I both have it and our dog. It amazes me that the only get well card we got was from the people he works with. They gave it to us when he had to take three months off from work.
So while I sit here wondering what this disease is doing presently to my body and what our future looks like I am sure there are those in our family that just don't get it.
Some people that are closest to me I think stay ignorant so that they don't have to deal with understanding the devastation...
It hurts...
I think next time I see some of these doubters I will offer to give them a big, sloppy kiss and see if they still feel I don't have this. ;0)
Take care and find the support you need from other's suffering with these tbi's - because truly they are the only ones that can truly understand...
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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posted
I've lost alot of friends over the years, because before being diagnosed, and KNOWING something was wrong with me, everyone thought I was just a hypochondriac, and they got tired of me complaining. Now that I've been diagnosed, they just seem too busy with their lives to care one way or another. I also get the "but you look so good, I thought you were sick" routine.
Now that I've been diagnosed my worst is my husband also. We work together as well. He already has the mind-set that if he has to work hard, I equally have to work hard.
He doesn't get the whole Lyme thing. The only reason he went to one LLMD appt, was to ask him if HE could get Lyme from me. The LLMD told him NO, he would have to have been bitten by a tick himself.
I'm going into my 7th week of IV Rocephin, w/ 1500 mg of Flagyl daily. He's had to take me to the ER once for gallbladder. The first herxes I had were just like the flu for a coulpe of days, high temp, chills, cold hands and feet, achy all over.
Last week I came down with bronchitis, a sinus infection, AND a urinary tract infection. To top it all off I quit smoking Monday(cold turkey after 35 years), and he still hasn't noticed and he's a smoker too!
Every day all I hear is how far behind we are in this restaurant we're building, how bad the house looks, and how everyone is telling him how bad he looks because he's been working too hard and is beyond stressed out.
I tried to tell him the other night that I was having a hard time coping with this disease, just coming to terms with the fact I have a life-time illness, and it's scary. I got no sympathy.
I could go on and on..... you guys are really all I have, and I can't begin to tell you how much I treasure your care and support. Sorry so long, but I feel so alone as well. (And I swear these antibiotics make me depressed as all get-out, and I cry at the drop of a hat).
Take care, Jill
Posts: 203 | From Jacksonville, FLorida | Registered: Oct 2005
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posted
"Hi Gwenb", This seems to be pretty common, not just with Lyme but with any Chronic / Terminal Illness. I have a dear friend that has a rare type of lung cancer, just because she looks healthy, it's hard for people to understand what she's going through. I myself get caught up trying to explain, thinking that I'm educating people, but untill they go through it themselves it hard for people to comprehend. "Peace & understanding be with us all", Robin
Posts: 139 | From Panama City, FL., USA | Registered: Jun 2005
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geniveve
Unregistered
posted
boy, i think i could have written most of these responses. my husband is the worst of the lot.
i've been called lazy, fat, told to go back east, get a cowboy, get another job (i retired after 30 years). i could fill pages with his comments
i've been told to "get a terminal illness then i'd have something to worry about." that one hurt the worse.
when i try to talk to my family, they just say, "oh, yeah, well i hurt here and go on...""
what really hurt was what i thought was a friend who was a nurse, told my husband after finding out i had lyme that i was depressed and needed help.
people make this soooo much worse.......having to hold everything inside.......sometimes you just want to say "ok, Lord, I'm ready to go NOW"
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posted
I don't know why people think I just decided to give up those activities one day just for the hell of it.
Boy do I know that one! I'm an athlete and have had to curtail my sports so much. I dream of being able to play sports to the level I used to. People who aren't into sports don't know how passionate we are about them and don't know how hard it is to give up what we love.
One of my best friends had LD but caught it instantly and took abx for 2-3 weeks and got over it. So she thinks I'm making a big stinking deal out of chronic LD. Meanwhile, I'm holding onto sanity by my fingernails. Wild stuff.
Posts: 33 | From Florida | Registered: Nov 2005
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Have your husband spend 15 minutes on this site. He might get a glimpse of what we're going though.
Posts: 33 | From Florida | Registered: Nov 2005
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Just Julie
Frequent Contributor (1K+ posts)
Member # 1119
posted
hey ya folks, I'm a long timer, bit in 1987, symptoms popping out of the wall in 2000.
Been reading this board since May of 2000, and found that most people have come to the same conclusions: no one really gives a sh*t unless they've been thru very similar situations themselves.
That sounds pessimistic, callous, negative, etc, but really, it's the truth. I'm a nurse, and while I think when I was working as one, I was compassionate, I probably wasn't, because back then, I was strong, young, healthy, lean, and athletic. I was an "outdoor person" and completely in control of my universe.
Now that I have symptoms that can derail my day, week, month, etc, I have much more empathy for those with other disease (even lyme!) than I did when I was a previously healthy know it all.
My ultimate mindset in conclusion of what I have lived and witnessed while conceding that I do have a chronic, lifelong disease (yup, the lyme) is that it's best to just keep a stiff upper lip, button up the discourse on what's the symptom of the week (with the lyme, because it comes and goes as we all know)and acknowledge in our hearts and in our minds that we are not going to get special treatment, or sympathy from those that we depended on it from.
I come from the life situation of my husband, and all of his family not acknowledging that myself and my 2 sons (and yes, even my husband) have lyme, we're chronic, and it does wax and wane. We "look good!" and then we have times were a symptom comes back and we just don't.
I honestly feel the best thing we can do for ourselves to lower and cut out our stress over this situation is to let it go-----it only brings hurtful feelings, and we need to say that we see that this hurts us, but it also does nothing to help us.
People will never become the compassionate caring souls that we need them to be for us while we travel down the troubled roads of lyme disease. I think we need to see that the people who have lyme, and are having no one support them, is where our focus should lie, and our energies need to go.
Wasted time and feelings and effort to those who could care less, or gloss over our shortcomings is a truly wasted effort. When you realize this, can internalize it for yourself and truly accept this, you will move on, and go forward.
It took me some time to come to this realization, but it is worth it, once you come out the other side.
I've acknowledged that I have a husband who is missing a sympathy gene (hi Brad!!!) and it's not my fault, and I cannot change him. I can only change how I react to his insensitivities, and go on with how I lead my day to day life. He will realize what he's done to me someday, and maybe by then it will be too late for him? I do not plan on staying with him the rest of my life, because I believe I need to find a gentler, better path, and while I'm here with him, it's just too damn hard to find inner peace. In 4 yrs my youngest son will graduate high school, and kid custody will not be an issue, and I will probably leave. the 2nd half of my life does not have to be all doom and gloom, and rocky roads, I anticipate (if I'm still well enough) to find greener pastures, and Europe sure has a strong siren call for me.
Cheers folks, go to those who know what you're going thru, it's all here for you! Julie
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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posted
I have learned so much over the years and have personally responded so well to long-term treatment that I pay little attention, these days, to others' doubts and usually try not to discuss it except with the "principals."
The doubts that bother me most are my own. I have kids who are still ill to one degree or another and every so often I wonder --IS this really Lyme? I have ended up having them checked in every way possible for other diagnoses to settle my own doubts, and sometimes have even opted for other treatment for these other things and their symptoms --with less evidence than I have for Lyme, mind you.
But I wind up back here --because it really is this, because we lived with ticks in a Lyme hotspot, because their WB bands keep expanding, because these are the only tests in an extremely elaborate differential that have ever come back positive, and because in the end this therapy if you stick with it helps when nothing else does.
It's hard to keep the faith given the state of the evidence and the state of the art --it's easy to understand doubts, the whole thing is so utterly unbelievable you have to experience it firsthand, and even then...
Posts: 8 | From CT | Registered: Feb 2006
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