posted
Hello, I have been on the lyme (and bab) express to hell for the past 10 months. Lets forget about all the physical symptoms for a moment and talk about the worst part of lymes disease; The negativity, skepticism, and generally poor behavior of those around us who do not understand this disease.
My family was supportive and concerned at first, but have all seemed to devolve into a kind of quiet skepticism that exudes off of them like stink on a skunk.
I get down-right insults hurled at me like; 'sometimes when a person is depressed they can FEEL sick' urrrrgh!! I am not depressed you #$^! I have a disease! Or even my dear ganny who was the most concerned upon the onset has changed her tune.
I can no longer confide in them or discuss my symptoms with any of them which makes this even harder. When I talk about my dizziness, I get told that maybe its something I ate or maybe I should try blowing my nose! Each symptom they attribute to a different, completely unrelated cause.
Or the best is my cousin who continually repeats his mantra of 'lymes disease usually causes joint pain' ( I have no joint pain, only some floating muscle pains). He keeps repeating this, even though I have explained to him that there are many forms of lymes disease, they don't all cause joint pain, and LD effects different people in different ways. I have explained this twice but he just repeated it the other day, by way of implying that perhaps I am just a kook, imagining all this.
Sorry for the rant but honestly I only have one friend who has been logical and 'in my corner'. I'd like to hear your stories, so I don't feel alone in this.
Posts: 41 | From astoria, new york | Registered: Feb 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
When I didn't get well within the first year of treatment, my sister in law started saying things like, " I never believed you had LD". She would say "you just need to take an antidepressant". Stuff like that.
We have all had these kinds of statements made to us. If not statements, then you get the eye roll or the talking behind your back like you are a hypocondriac or something.
After a while you learn to ignore it. These people are just ignorant about LD. I was too before it happened to me. Only those that have experienced it first hand can understand it.
Somehow you have to get past their ignorance; because if you don't, it will be too stressful and not good for your recovery.
If you want to help them understand LD, you can buy the documentary "Under Our Skin". It pretty much explains everything. Ask them to watch it. If that doesn't help, then stay away from them or just don't bring it up around them.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
My relatives are extremely supportive of me, but even so, I have gotten a few of the comments that show that they just don't understand how sick I am.
One week when I was having bad physical and emotional symptoms (the ones that make me cry a lot), I tried to explain my anxiety over my future prognosis--this was before I had seen an LLMD but after I believed I had Lyme.
I started crying, and my mom said, "You need to stop worrying about it so much and making yourself sick."
Hello???? FIRST I got sick, and THEN I got worried about it.
Another time I was discussing with my relatives the impossibility of my packing up all my things to move in with them, and my brother said, "Why don't you try just packing one box a day for a month? That's what I did."
Um, my fatigue was bad enough that the thought of packing ONE box was overwhelming at that point. I'm not sure I could have packed one box in a week.
Another day I mentioned that my neck was particularly painful. I have had a stiff neck every day since I got Lyme more than a year ago.
And my sympathetic dad says, "What happened to your neck?"
I said, "I got Lyme disease."
He looked surprised to realize that it was still a Lyme symptom.
If this is what you get from people who really care and believe you and are actively helping you to get well, I can only imagine how awful it must be with people who don't support you or are hostile.
My family understood better after I asked them to watch "Under Our Skin" with me and we talked about it.
Afterwards they hugged me, gave me money for an Igenex test, and told me they were glad I had kept insisting until I found an LLMD who would help me.
Previously they had been skeptical about whether I had Lyme and whether I should be going to the LLMD or someone else.
It depends on the relationship you already had with your family, and maybe they can come to understand better and maybe they can't.
If they can't, then do what you can to avoid subjecting yourself to their negativity if possible.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
That is my biggest problem with this disease. It is something out of the twilight zone. I wish I could give it to the deniers for a few months.
Posts: 743 | From New York | Registered: Apr 2009
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i think we all know exactly how you feel.
some days i get so down i would love to say "just give them my lyme, please...." but then i realize it won't happen, but honestly i do think about giving it to somebody else.
if they could only walk in our shoes for just a damn minute, they'd realize we are not faking it, not looking for meds or pain pills, not seeking attention, oh yeah, i've heard it all.
the only solution is to keep quiet but it's so hard.
like i've said a hundred times, if we were in casts or an accident or something, people would understand, but we have what is called a "silent" disease. no obvious symptoms and we suffer in silence.
it sucks..
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
This is one of the most painful parts of this disease.I have heard it all too and each time it still cuts me like a knife. You would think after 14 years of being sick I would be used to it, but I still let it get to me. I would also love some tips on how to not let it bother me as much. I would never think of saying some of the things people have said to me. I can't imagine being so rude.
Posts: 146 | From Midwest | Registered: Feb 2005
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
It would really help if it were in the media more. Seems people don't believe something unless they see it on TV. It's stupid but it's the truth...
They don't act like this if someone says they have cancer, diabetes, heart disease, AIDS... Some people have more empathy for drug addiction. I swear, some 70 year olds have more energy than I do at times.
You aren't the only one suffering with this denial. Lots of people who have Fibromyalgia, CFS, Gulf War syndrome, etc. go through the same thing.
I think it's part of the whole package of this illness. For some reason, "they" just don't want the world to know about it. They don't want people to get the help they need, to get disability, drugs, whatever...
Teh word really needs to get out, though - to prevent others from going through all of this...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I would love to collect a jar full of ticks and throw them under a few people's blankets. I wonder if anyone has ever thought of doing that.
Posts: 41 | From astoria, new york | Registered: Feb 2010
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
i hibernate and find that there are not too many people I can be around. I don't understand this and I live with it.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I experienced the same suffering. The psychological implications has been a living nightmare that I can't wake up from. However, I won't stop until I do.
I wake up every morning -- like right now -- and ask myself "I don't think this is me, is this really happening?" The same answer so far has been, no it's not me but it's the me I'll have to be for today, and yes it really is happening.
-------------------- 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
Thanks for the prayers Geneal. Right back at you.
I guess I'm finding it hard to understand the strange reaction that others have towards this disease.
Likewise, the strange reaction I've gotten from doctors. This whole thing has been like a trip to the twighlight zone. Suddenly everyone seems to be acting illogically and conspiratorial.
I would have never imagined that if I say something hurts, or that I feel weak, or etc that people would react with skepticism.
I've been alive for 38 years and have never shown any signs of being a hypochondriac. Why would I suddenly be making things up? Isn't it more likely that I am telling the truth? What reason would so many people have to doubt me??
I don't understand these reactions and it frustrates me. How do you react to somebody who basically calls you a liar? I'm going to start punching people in the mouth, maybe that will make them think straight.
Posts: 41 | From astoria, new york | Registered: Feb 2010
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posted
Please pm me..i have been thru 15 yrs of a living nitemare to say the least.....
....i was in an accident ..thats how it all started..i just cant deal with the fact that im getting older not better, each day that goes by..seems like an eternity.
.i used to be on e of those people that are like ..im starting my diet and workout program on mon..well here it is mon and i just cant do it..
how do u go from walking 5 miles a day to u cant get out of bed in the am?
i watch the people outside in the pool that i have been in once since i moved here..
the normals, do not know that im 30 lbs overweight coz im sick.
they just see a fat blob that doesnt care about herself.and that is so far from the truth..
i was on my way to competing in bodybuilding shows..i wwatched what i ate and exercised religously to end up like this?
life is not fair
Posts: 92 | From bethel, ny | Registered: Jan 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Kirk, you sound just like me man. Right down to punching people for calling me a liar.
I've confirmed that people are insane. The world doesn't give a **** about whether we suffer or not. The only people we can rely on is each other, and those few of us lucky enough to have good doctors and loved ones.
Many of us have "loved" ones who actually don't love us at all, and instead treat us like ****in' losers and as we're the problem. Then you've got the insanity of the doctors and the political machine trying convince you -- especially if you're young like I was -- that you're fine, that if you just push harder and go to school, hold a job, hang out with friends then it'll be fine.
Guess what *******s, it wasn't fine. We face a lot of negativity Kirk, but those who are unwilling to help us are the enemy whether we like it or not.
We've gotta stick together.
-------------------- 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.
quote:Originally posted by METALLlC BLUE: Kirk, you sound just like me man. Right down to punching people for calling me a liar.
I've confirmed that people are insane. The world doesn't give a **** about whether we suffer or not. The only people we can rely on is each other, and those few of us lucky enough to have good doctors and loved ones.
Many of us have "loved" ones who actually don't love us at all, and instead treat us like ****in' losers and as we're the problem. Then you've got the insanity of the doctors and the political machine trying convince you -- especially if you're young like I was -- that you're fine, that if you just push harder and go to school, hold a job, hang out with friends then it'll be fine.
Guess what *******s, it wasn't fine. We face a lot of negativity Kirk, but those who are unwilling to help us are the enemy whether we like it or not.
We've gotta stick together.
I've come to realize that those who are supposed to be my 'loved ones' are the type that will kick you when your down.
I now believe that, deep down, they want to see others fall so they can feel superior. And to blame my problem on some sort of hypochondria just allows them to blame me, instead of a disease that I have no control over. It allows them to justify their callous remarks and poor behavior.
Posts: 41 | From astoria, new york | Registered: Feb 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
And that's on them man, totally on them. If that's how they choose to behave, then it's their responsibility for whatever consequences befall them.
We can only make the best decisions we can for ourselves so that we can become as independent and as healthy as possible.
Anyone who stands in the way, is to be ignored and treated as though they were an obstacle on a side walk. Oh look, there is a broken tree limb, or a pot hole.... oh well I'll just step over it.
Ignore it, step over it and treat them for what they are. Ignorant and disrespectful.
Ignorant and disrespectful people get "silence." I figure if I punch them in the face, I might hurt my hand which would be a little counter productive to "my" health. So, detaching and stonewalling/silence do the trick. One important difference here though. Resentment is like drinking poison and then expecting the other person to die -- so......we always have to "let go" of prior anger and frustrations over someone elses poor behavior. We can't recover while nursing resentments in our heads too.
**** em' when all is said and done, I'm not going back to the people who claimed to love me but denied me -- especially when I provided abundant information to educate them and helped them to understand.
They didn't understand because they didn't want to. Period. They were only thinking about themselves. And since they couldn't get anything more out of me, I became an "inconvenience" and a burden. **** that. We deserve better. I no longer am friends with anyone who talked ****. I'm not longer close to family who either A: abandoned me or B: mocked me, and now I have an entirely new group of people who do care. I have a great girlfriend. Sadly she also has Lyme, but at least she grasps the situation. Her family is wonderful. My mom and dad took awhile to come around but they weren't actually jerks about it from the start, they mostly just couldn't help and didn't know how. They were as lost as I was.
So, I have a life worth fighting for, and people worth caring about -- unlike the losers who stood in my way.
-------------------- 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.
Anyone who stands in the way, is to be ignored and treated as though they were an obstacle on a side walk. Oh look, there is a broken tree limb, or a pot hole.... oh well I'll just step over it.
Ignore it, step over it and treat them for what they are. Ignorant and disrespectful.
Ignorant and disrespectful people get "silence." I figure if I punch them in the face, I might hurt my hand which would be a little counter productive to "my" health. So, detaching and stonewalling/silence do the trick. One important difference here though. Resentment is like drinking poison and then expecting the other person to die -- so......we always have to "let go" of prior anger and frustrations over someone elses poor behavior. We can't recover while nursing resentments in our heads too. .....
Best advice. Thanks and I'm glad to hear everything is better for you now.
I know punching them in the face is only going to cause me more problems that I don't want to deal with right now.
Posts: 41 | From astoria, new york | Registered: Feb 2010
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posted
I am not depressed. Although I do have treatment resistant anxiety. In fact, anti-depressants and anti-psychotics have put me in the hospital and I was discharged with "Adverse Drug Reaction".
That being said, if you are not doing anything for your mental well-being, the disease and/or your situation can send you into a downward spiral.
Are you any different mentally than before your illness? Are you more angry, sad, moody, do you have OCD, etc? Lyme and co-infections can cause many neuropsychiatric symptoms as it can enter the brain. It can also cause indirect psychiatric symptoms from all the stress and trauma of living with the disease.
If your family AND relatives are seeing psychiatric problems perhaps they exist. I don't know your family, and I don't know you, so maybe I am wrong. I'm sure you feel terribly sick as well, but like I said, you can't just leave psych problems alone!
I do think in many cases it's important to see a psychiatrist and/or counselor to deal with those symptoms. Talk therapy may work for some, but it is useless for me. I do neurofeedback, biofeedback, and hypnosis instead of talk therapy.
I think you may get more respect from your family if they see you trying to deal with your illness on all levels. My family still gets frustrated with me at times (especially when I am not doing well), but at least they know I am giving everything a try.
Not everything you try will yield benefits, but I think you will gain a lot more support from your family if you show that you are giving everything your best effort.
Also, try not to let comments like your cousin's bother you. Just tell them that's not the case in a calm tone, and leave it there. It's not worth arguing or fighting about it. I don't have joint pain as well, and I have received comments like that before.
I think it's extremely important to address the physical, emotional, and spiritual components when dealing with a disease like Lyme disease.
I hope this is helpful.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
I've never wanted to be a rich man, but now with this disease I wish I were Bill Gates. I wish I had the power to have the research done to prove that it is a living bacteria and also prove the damage it does.
We aren't going to get anywhere until that happens. And it does seem like a conspiracy against that from occuring does exist, whether intentional or not.
Posts: 743 | From New York | Registered: Apr 2009
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
quote:Originally posted by Kirk: I would love to collect a jar full of ticks and throw them under a few people's blankets. I wonder if anyone has ever thought of doing that.
LOL!! That's hilarious!
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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LOL!! That's hilarious!
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