posted
I feel like I cannot talk to anyone anymore. Lyme+ for over 20 years makes me realize times I am in a "lyme rage" or "lyme sad" mood or just too sick so I hide whenever I attempt/think to interact with friends or family.
Got an earful f/someone who said they prayed for me but her husband has it worse b/c he has diabetes and she hates it more than any other disease. Even mine. Huh?
So I've realized, unless you have it, you don't know....and even if you think you know, you don't.
I'm not a big "POOR ME" person but sometimes wonder if I should be open and honest about how really sick I am? By being strong and silent, I'm finding family and friends are starting to treat me like I'm a hypochondriac or chose to be a "shut in" who isn't dependable to attend family functions or go shopping etc". Basically, I'm a loser?
I've never shared dark results and realize with my "oh, I'm doing ok but hope to be better tomorrow" way of dealing with it is bringing reactions I'd never expect.
When I'm angry or sad or just too tired, I stay away f/all of them. It's lonely but I figure I keep my dignity and spare them the reality of my life.
But when a really good friend says, "you think you have it bad? my husband has diabetes and it's the worst illness in the world and I hate it". Well, I hate it too, b/c any disease that hurts someone I love is horrible.
But I feel like b/c I'm trying to appear strong...I've been put on the "whiner list" if I tell someone I've had a bad day/week/month/years.
This is a lonely disease, my life is ruined and only ONE person, a best friend who died from lung cancer told me on our last call, "I'm so sorry I didn't understand how sick someone could feel every day. I love you and I'm so sorry I didn't get it". That was the last time I spoke to her. She died a week later.......
Not sure why I wrote this post, maybe just for general support as the thread is called. I'm just so sick of trying to get people to understand how horrible every minute of every day/night is for me, 20+ years with this disease.
Now, I've b/c the joke of my family b/c I'm always sick. How sad and frustrating but I'm sure most of you have been through similar situations.
Anyway, thanks for letting me vent if that's what I'm doing.....but better than screaming or praying again. Even when I do, nobody seems to hear..........
Posts: 867 | From PA | Registered: Jan 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi there <<<<< healthyw'w' >>>>>,
All to often,as TxC' and I were discussing, most people don't get it.
If they don't have LD and co's, or don't know someone well,who has it,they really do not get it.
I have Diabetes as well as LD w/ Co's, the diabetes is most likely from the LD bacteria competing w/ my body for fuel/food. so very often people are not educated about what this LD and Co's illness can do.
And to many times, it's like they are running away w/ their fingers in ears trying to not hear.
It is difficult for certain,it's a good thing we have Lymenet!!!
Hugs <<<<< healthyw'w' >>>>> Hang on, we'll be praying, sometimes it's all I know to do.
Jus' Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
Do you have opportunity to go to any Lyme support groups? That's where I have found sanity! Listening and being listened to, understanding, truth-telling, caring, support by those who know what it's like to go through this very unwanted and usually invisible experience, where we can be real with each other.
I think it's Very important for us to be able to tell the truth of what we're going through.
One of the things I do when someone says X is the worst disease, I try to offer some sympathy, as in, yes, that must be difficult to go through.
I don't know if anyone can say what's the worst discase, but point is, everyone is suffering in some way.
I find sometimes by me listening well to their hardship, I can get their ear about mine. I think it has to do with "getting" them first, like they feel someone's listening to them, and out of their gratefulness for that, they listen to me. It's like we trade listening and support.
If it's one way, as in they want me to offer sympathy to them but they're unwilling to offer it to me, I don't continue the relationship.
I also seek to focus on the science of the illness so others can better understand why we act like a "loser." We're not, really - it's the illness doing it. I actually try to describe what the illness is scientifically doing so that people can get more of an understanding of the challenge of functioning.
In other words, I switch the judgment on me to a science description, so they stop blaming me and start to realize that we have a biological challenge on our hands, so to speak.
Then when they get that, they usually ask about what research is being done. When they ask that question, then I know that they realize it's not my fault and they stop judging me.
So what I'm suggesting - if you don't already know the science of the bugs, what they do in us and how we combat them, then learn more, and you purposely switch the conversation topic to science instead of you. Put the focus on what's doing this, 'cause it ain't us!
Sometimes it helps to use some humor, as in "Those darn ketes are at it again!" "what?" say the others. Then explain spirochetes.
I also listen very carefully to the words people are using. Like if they use the word "lazy" or "loser" or whatever it is they say, I repeat it, to let them know I heard them, and then continue on to make my point.
"Yes, it may seem to you like I'm lazy, and indeed, when I don't show up for events, you probably wonder about me, yeah, I get that, but actually I haven't been feeling so hot. Like I'd love to attend that event but have just been feeling under the weather."
Another technique I use is to pepper someone with one-liner questions. "Know anything about Lyme?" "What?" "Did you know it can do X?" "Do you know what it doesn't like?" "Do you know how to protect yourself and your pets from ticks?" "Do you know that ticks are in veg, on wood and on animals, like everywhere?" Etc.
What you want to see is what they respond to, then make another statement about that focus and deepen the inquiry a little more. It should ultimately be instructional.
So I think there are a lot of conversational techniques that could be tried. I can pull it off about half the time now - get someone to get what it is I'm going through, when they started off with a really pejorative statement.
One last comment - sometimes I go a lot deeper with the person, as in, "It must be awfully disappointing to you that I don't attend events or go out with you," etc. Because now I'm addressing their feelings. They lose us too.
Then when they admit that feeling of loss, that's when I say, "Me too, I also feel that loss."
Sometimes this is a deeper way of bonding with others - that you understand their feelings and they then understand your feelings better.
Not that they understand the disease, but that they understand your feelings better. That's a step forward in the right direction, towards some empathy.
Posts: 13117 | From San Francisco | Registered: May 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi again <<<<< healthyw'w', and Robin123 >>>>>,
Healthyw'w', I hope things are a little easier for you today.
Robin', I liked what you were explaining, and how to turn a conversation to help others realize what all the LD illness can entail.
We talked w/ our Pastor sometime back, and once he understood a bit more about LD, he talked of how it is an oppressive disease,it weighs on one.
We've been trying to find ways to explain what it is, w/o it seeming like the list of symptoms is a never ending on going droning [although I'm not sure it isn't].
The science facts to do w/ LD may help,in the quest to explain, And perhaps take away some of the fears. Example:This is what it is, this is how to avoid it, if you may have been bitten these are the steps to take.
I don't edit very well, but I try to keep informed. Part of the issue,for others,I think,is so much happens in this world, they feel overwhelmed by yet another issue,another danger.
Perhaps they hide behind the known and recognizable?? It does make it harder tho' to break thru the misunderstandings of it all.
The 'loss' aspect is a good point to work from too. We recently had someone want us to take a couple hour boat trip.
TxC' explained a little of the health issues I face, I cannot travel easily[especially w/ no restroom facilities available].They had known there was some problems but not how severe.
We figure they tho't we were just avoiding some of the group get togethers . Many really did not understand how seriously Lime and Co's can affect one.
Healthyw'w', you'll stay in our tho'ts and prayers!
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
I find it's been a two-way street for me. Two of my brothers called to say their grandkids were bit by a tick. What should they do?
I told them.....they thanked me. And because the kids (thank God) didn't get lyme+ these are the same people now thinking well, it hasn't killed me, so it's more a PIA disease, not life threatening and I should really be well now. Or act like I am......????!!!
I've provided a video link to "Under Our Skin" for their protection and explanation of my chronic/late stage issues. NOT ONE OF THEM WATCHED IT.
That's when I give up but the heart in me feels bad to still let them down. They don't get it nor will they ever.
I accept and go on....and on....and on.
Just got a phone call from sister in law to tell me her daughter got engaged on Valentine's Day. I told her I wished them all the happiness in the world and it was such nice news.
Next thing she said was, "I don't care what it takes but you better plan on being there! Won't take any excuses!". REALLY??????
and I just endure and go on.
Posts: 867 | From PA | Registered: Jan 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Healthy-Coming here was one of my few life lines. I had some friends that I'd talk with on the phone but as far as my spouse or family being supportive, it never happened for me.
I would try and talk with those close with me and for whatever reasons they weren't interested.
So I lived and coped alone during almost my entire treatment of over 2 years.
Still estranged from distant relatives who thought I was being selfish.
One of the silver linings for me through all the illness, solitude and poverty is that I'm so very proud of myself.
I'm thinking that you must be one hell of an individual.
I'm here if you need me.........
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6161 | From Columbus, GA | Registered: Jul 2004
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posted
What a wonderful support group here. All of you are so much more special and understanding than those who love me the most. Funny, isn't it?
Goes to show, only those living this understand. And one kind word can save a person on a very bad day. I must remember that....give as well as receive kindness. I try but there are times I avoid to not let anyone know just how bad it is.
Maybe I'll come here more often when that "outside" world gets me down. I'll try my hardest to give back the caring so many have shared.
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
healthy, I could have written what you said for myself. you are right in that people don't get it. and I have shared with a very select few(very few, like 4) people what I am /was have been going through, and I hate to say, but even when you tell the dark scary stuff they might say more things like, "I am so sorry... it hurts me to hear this about you..... I wish I could help...."
that is about all I got.
people - "normal" healthy people- just do not get it one bit.
I even have 1 of my 2 best friends whose ex husband killed himself with life long lyme an d she stil ldoesn't grasp what this does to you. or at least she doesnt seem to . I can give her the benefit of the doubt and say she might becasue she lived with him for 20 years, but I really don't think she does.
my other best friends definitely does not, as she can text me every day and ask how I am and pray for me- which is GREAT- but I am the type that needs , craves, direct human support. and I have seen her in person about 10 times in the last 18 months of being really really sick. and she lives minutes away!
I can count on my one hand how many times people offered help and actually physically helped me.
I must admit that I was like you in that I did not share the really bad stuff with most people and I do regret it, but the ones I did share it with, the ones that I thought would support me the most.... well. maybe i have a different idea of what support is?
I am the type when I am sick I like someone to take care of me. I am talking like a cold or flu, etc. this is how I like to care for others- to actually physically help. my husband on the other hand does not need anyone hovering over him when he is ill.
everyone is different, and I think from what I have been hearing lately as I divulge more of the darker, painful, emotional sx of this disease(s)is that people don't really feel comfortable with sick.
I used to sing. my music director and I had a good relationship and we shared very personal information about loved ones and ourselves so we could pray for each other and support each other. when I got really sick she backed off.
I have been updating her via email on my situation and the liklihood of coming back to sing, etc..... she doesn't respond much. this has been very upsetting to me thinking she must not care, or did my email get lost, etc.
she would even once in a while write on her own and ask but when I respond she still didn't say much. and I was not writing a pity party as far as I could say since I kept it short and to the point each time,
I decided to lay low and not "bother" people any more. clearly no one cares and maybe I was being too anoying.
a couple weeks ago she emailed me asking . I decided to let loose and I told her so much of my true feelings and all the things hindering my recovery, etc. I figured what the heck, right? what do I have to lose- nothing.
she never wrote back. I got an update about the singing group last week. I responded and asked her if she got my last email. she said she did but that it was so much pain and she didn't know what to say to me.
well. I think that stinks, but I also can realize that most people just cannot handle when times get rough. or they, like your friend with diabetic husband, they just have enough in their lives and can't accept more pain from the outside.
I really don't know I am just guessing.
I have to tell myself that or I get really mad and upset about it.
I decided to go to the singing rehearsal for our group Tuesday. when I got there the director said how great I looked and she kept insisting that I am getting better, right? you *are* getting better though, right.... I didn't know what to say. yes, I am better, but far from good. like she was trying to tell me to just BE better!
I have always been the jumper-inner. the one that leaps in and helps the person in an emergency and I have been amazed that 99% of people dont have this in them. so maybe that is part of it. that I expect too much from people . just because I am like this, doesn't mean everyone else should be or can be.
you sound like maybe you are like me in that way too.
I know this is long, sorry, but it is helping me as much as it may help you writing this.
I would like to share something that happened this week to me.
I have 5 siblings. we are all about 2 years apart in age. close in age, but not in spirit even though some of us may feel like we are.
I posted some old family photos on facebook the other day. they were from the 1980s. I wanted to share a fond memory with them. they were enjoying the pics and then it got sarcastic and they started laughing and pocking fun at me for forgetting the exact year or it didn't match up or something....
I , being chronically sick, have had enough of sarcasm and a certain post really got me upset even though I know it was meant in jest. others responded with laughter, but I thought is was insensative. I deleted the photos and all the posts. that made me feel more safe.
my brother , the next day, asked what happened to the pics. I decided to tell him the truth!
I told him how much it upset me and I am in a fragile state and all my own family's hardships, etc.
we had a nice chat, but it ended with him telling me to lighten up and even though I am sick, etc., I must learn to find the laughter in "anywhere I can".
I told him he cannot understand unless he was living it. etc..... and that I wasn't in the place in time to need to hear sarcasm, etc. and that how no sibling has reached out to me to help and then when they all laugh it didn't seem like it was a laugh with me, but at me.
then I heard nothing from him.
I hope it sunk in, but I am sure they will talk about it, maybe, and say things like "she is so sensative" or "there she goes again"....
at least I got it out.
I did decide to tell anyone that asked right now the truth and pour it on with details. keeping it as short as possible becasue everyone is in such a hurry , righ? what could it hurt?
the result is so far, 90% of people have no time to hear it. 10% are angels and really care and have told me they car and they have really listened and sympathized.
so, it has been the same percentiles pretty much whether I tell them all the details or not. 90% just doesn't wanna hear it. or they think they do or are helping, but they just are not.
so my realization is that we are all pretty much alone in this , or whatever life hands us, and that we alone must deal with it the way we need.
reminds me of a lyric quote from Jimmy Hendrix: "“I'm the one that's got to die when it's time for me to die, so let me live my life the way I want to.”
sorry this is so long. I hope it helps somehow. as you can see I need help with this same issue. ha. may our days get brighter. I will be thinking of you and praying you feel more uplifted in your days.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Oh Lisa, I could identify with your whole journey. Thank you. The one person I shared it all with, even to the point of planning my own "end", she cried for me.
I didn't want her to be sad, I just wanted her to understand. That's when she changed...oh still prays for me but now she's on a kick of "let's work on getting you OUT". If you feel bad at home, you'll feel the same way if we go and have lunch, or get our hair cut...the key is to never stop moving. Hmmm, I think she still doesn't get it.
I told her even to take a shower and dress is a 3 hour journey for me. One to get me going into the shower, then just getting the clothes together to wear....by the time I've done that, I'm spent and even w/pills, my body is aching and I'm so dang fatigued I can hardly raise my hands to shampoo.
Her response? "Take a shower the night before. Then you can just get up and dress so we can go. In fact, I want you to make me a promise. In two months on such and such a date, you and I are going to go to lunch and get a facial". Hmmm, nope, she still doesn't get it that I can't plan for tomorrow...let alone 2 months ago.
I did not make her that promise b/c I didn't want to let her down again and I know she'd be pushing up until that day to "RALLY ME".
Thing is, I know she loves me and cares. I've told her that, but it doesn't stop her from thinking this is all "mind over matter".
So yes, I get it about family and friends. Even the ones who try so hard cannot understand. So I told her that and she got angry at me and said, "I think you're just choosing not to be positive".
Ah, if only it was that simple huh?
Posts: 867 | From PA | Registered: Jan 2006
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
Healthy and Lisa, I understand what you are saying! Especially the "trying-to-get-you-out-of-the-house" type of thing!
Though right at the moment we aren't having anyone bothering us. Sometimes no support is better than 'unhelpful support'!
The people who are most supportive are others with chronic illness (Lyme or other conditions)
I've given up trying to explain to the others - as you said, they don't want to hear it. They'd rather believe its all 'in your head' than that Lyme & co's could be this devastating.
Posts: 2259 | From USA | Registered: Aug 2011
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posted
I look at it as a spectrum. Some people are there, as in they get it when I tell them I'm not feeling well. Sometimes you can't just fix someone's pain and they know to listen and let the person talk and not have to do anything about it.
I think we have to screen for those people. I usually say the smallest thing, to see if they respond in an understanding way. I actually never know what someone's going to say - they might be going through it themself or know someone who is, and be ok about it.
But as most of you have said, most people are anywhere from the good intentioned "you'll feel better soon" to amscray - ie, don't want to even have us in their lives.
So even there, I test to see where people are at, with a statement or two. If they're on the kinder end, I'll start with some simple educating things. I think people need a picture, they want to understand. Because they're comparing whatever they think you're going through to what they know, which is, a lot of the time people "get better."
I have a science gradation I use for that, from simple to more complex. I start with a very general statement, and work towards more detailed if people are actually up for discussing it.
If they are not interested, I evaluate quickly how important they are in my life. If not, I drop it and move on.
If they are significant people in my life, I actually go ahead and up the ante, because I may need to get their attention that something is going on that I do not have control over.
I may put it in general terms, as in I have a health condition I have to manage. It helps to use "I" statements, not "you" statements so that people don't feel you're attacking them.
Something else that I've found gets through: to say it's not my fault - the tick did it. I have a known tickbite and can date every symptom. For anyone who actually knows when and how it happened, that can be strong to say. It gets their attention and stops them from just blaming me for what's going on.
And I guess if you don't know what happened, you can say it, but put the focus on the facts of what the illness or illnesses do.
In a way, it's like setting a boundary in conversation, as in this is serious, this is how it operates.
If you get any more sympathetic response, then you can negotiate for more acceptable interaction, whatever you want out of the situation.
MannaMe, I've found a good response for "it's all in your head." I say, "You're right! It is in my head!" and then go on to explain spirochetal bacterial affinity for the brain and spinal cord.
That's not your usual everyday conversation! I don't mind the shock value of it, to wake them up a little more to what's going on. Sometimes people have to hear it a number of times before it starts to sink in.
As you do this encountering, it's good to listen to the words people are using so you can use them too, as it's the language that others are thinking about us.
Like if they say, Can't you just...? I say, I'd love to be able to ... - and I repeat back what they said. Then answer it, And I'm really sorry, but I'm unable to at this point.
My personal opinion is, as we get better at hearing the words people are using, and incorporate that back into our answers, people will feel like we're hearing them, because we are, and then they might start to hear us.
It's an experiment. I actually welcome conversation with others now, to see if I can "get" them where they're at and respond accordingly.
I don't expect miracles. But I like to see how far I can get. I only do this on the days I'm up for it, not my tired days.
Once in awhile, someone who's gone through this dialogue will tell me the next time we see each other that someone else they know has it, or they read an article about it, or whatever - point is, I got their attention and it will only grow.
One more point, and then I'll quit for now! I went through all this slowly, gradually, couldn't accept what was happening to take me out of normal living, especially with no explanation.
So in a way, I get it - I get that people can't fathom what this is, because I couldn't either, nor could I accept the impact on my life.
If you put yourself in other people's shoes, what they're doing and saying is real for them. I think we need to be gentle about it, because it's asking them to understand that there are stealth illnesses, bugs and relationships that can be taking away our lives, and maybe that's too scary to contemplate.
I often switch to protective info, as in anyone and pets can get this, and here's what you can do, in this way, I put a focus on something people can do. Whatever works...
Posts: 13117 | From San Francisco | Registered: May 2006
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
In july it will be 31 years I have had this US government cover up disease.
I am one of their first ginie pigs.
No one who does not have Lyme can ever understand us.
People just know that when we ask them to just not add to our misery, that it incoveniances them.
I am guilty of wanting my neighbor to get something that makes him hurt all the time.So he can learn to be concirdent of others. Not just say it's a free country i can do what ever i want!!!
Doesent matter if he burns my house down as long as the fire started on his special american freedom side of the property line .
Smoke,dirt,stench,chemical fumes,everything is ok,in his special free country.
Sorry i got to venting here!!!
Well mabey not?
I needed that!!!
MADDOG
Posts: 3997 | From Ohio | Registered: Oct 2000
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