posted
I'm not sure if Lyme is to blame but I seem to have an awful time making and maintaining friendships. I just got kicked out of a mother's group.
I'm so insecure that my feelings are constantly hurt and I when I complain they tell me I'm too sensitive.
So I'm alone again. Anyone else have this problem?
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
So sorry to hear this happened. Perhaps you could write your feelings about being hurt on a document or email and then put it under drafts and not send it. This way you've expressed your feelings but not put them out in public to be slammed.
The next day you should not feel as motivated to share those feelings and hopefully they will not affect you later on.
Wish I had better advise for you, but this may be worth a try.
posted
I think it's a matter of finding the right group, where people understand what you're going through. That's usually a Lyme support group. Do you have access to any?
Short of that, we take potluck as to what anyone else thinks about our situation. Sometimes I choose to be quiet about me and just listen and enjoy others' conversations.
Sometimes I just have to say I can't do xyz, and I try to say it as calmly as possible.
It can also help to have a therapist who is there for us and can help us work through our insecurities, which are magnified by being ill.
I wouldn't think you are too sensitive - you have the feelings you have. That's why a good listener, a good friend, a good therapist can be very good for us.
Bottom line: we need to do what we need to do to take care of ourself.
Posts: 13116 | From San Francisco | Registered: May 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Yes. Been there done that as many of us have. Its sad to lose long rime friends and family and not be accepted the way we are in groups set up for other reasons than lyme. Its important for us to reach out and forget about lyme for awhile but its hard
Righr ir wrong over the years i have blamed my wierdness(odten do to brain stuff) on other things...too much allergy meds, insomnia, head injury...its partially true but not the whole story cuz so many never get it no matter how long you try to make them understand
We have some long standing threads on here like the rife thread and the parasite thread...
Over the years i have reached out to moms with lyme or moms of kids with lyme...maybe its time for a support thread like that...maybe parenting with lyme...
I dont know. Just brainstorming
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
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posted
How about THE BESTIE THREAD...where u would go to have a chat with a best friend over something going on in your life...not really lyme related but affected by lyme cuz everything in our life is...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
yes yes yes...y'all know me here. I jus blurt things out. I've been banned so many times from so many boards I have a reservation in the barn!!!!
I've even been banned on romance book boards. can you imagine that!!
you're in good company here. just remember....
if your cat puts her kittens in the oven that don't make em biscuits.....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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momindeep
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posted
randi...you're just misunderstood... Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
I'm so sorry that happened to you. A lot of people have no idea how to be friends with someone with a chronic illness - or how to even be around them.
But honestly these people sound terrible! Who tells someone they are too sensitive?! Mean people!
I hope there is a Lyme support group in your area? Maybe you can find your people there. : )
Posts: 1737 | From Virginia | Registered: Aug 2011
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
yes, I do that all the time. no one likes me . well, some do, but not everyone and it is very hard to live with.
you need to find people that can accept you as you are, and this is the hard part.
I found church groups, mother groups, chatty women's groups, etc. all contain people that are not so understanding of things different.
I get so sad all the time about how I don't fit in. and for me it is from birth. no joke. I meet someone that thinks like I do about once every 8 years. and no, we never have developed friendships either. not sure why. but it was always nice to find comfort in knowing there is someone else out there that gets it.
as for the tick disease part of it- yes it makes it worse.
I had a time before I was dx but geting pretty full of xs, when I would say words I didn't even know I said. like "paper" instead of "mushroom" , for example.
God only knows what I was saying to people. !!
I had no memory of what I said ever when this happened (still happens sometimes). and many times people would snicker or giggle and that is how I knew I did it. I would stop talking and ask them if I said something strange. they usually thought this was pretty funny. of course I did not.
but before I knew I had lyme and other stuff; before I had any treatment, I would be a ranting , complaining *****. totally arguing with everyone about everything because I felt I was always persecuted or they were so wrong in everything and I had to save them- to teach them - to correct them!
this was really bad on the phone. I am very sorry about it all now but I was really mean to sloppy speaking bill collectors and anyone buggin me about anything I saw as offensive or against me. I was really mean. ask my family. they started telling me how mean I was . like it really stressed them out.
I thought I was fine. now I know it was the buggers. controlling me. I rarely get any rage now. sometimes it pops up, but I remind myslef that it doesn't have to be.
it is a sad lonely place for sure when no one likes you or understands what you go through. and they exclude you. even if it is a stupid dr or a bill collector.
sometimes I think now how I may like to tell all the people I know in the world that the reason I was a maniac was from parasites and tick disease, but that would be impossible.
maybe I will start with a few. it is hard for me to eat crow. even when I know it was caused by something out of my control.
I do find explaining things to people about tick disease and parasites helps them to be more understanding. more open to forgiveness. maybe you could try and do that, if not with this group, but next time.
sometimes I give people a warning straight out. and sometimes I forget and still make an ass out of myself. do you have a best friend? husband? sibling? that can speak for you when you are together or not? I just
had a talk with my husband when he got upset with me on how I spoke to his BIL. I wasn't trying to be mean but DH said I came accros that way and so I told him- gave him permission - that if he notices that kind of thing again
to interupt and explain that i have neurological damage from my lyme disease that makes me say funny things sometimes or react strangely.
some will get it, and some won't. those you just say "o well" and move on.
good luck. I hope you find some relief
-------------------- 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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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
hey RANDIBEAR, I got you beat- I was banned from a PRAYER GROUP!!!!
yup. all I did was question something I had an honest question about and they told me that I was a troll.
some people ..... I chalk it up to lack of IQ points.
-------------------- 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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randibear
Honored Contributor (10K+ posts)
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posted
don't even get me started hon. I was told not to come back at a beauty shop!!!!
his family dislikes me. no big deal...
got disowned by my own sisters who wanted me cut out of mom's will.
thrown off one healthboard for even suggesting somebody might have lyme.
and, top this, cut out of church choir because my voice is not good enough.
I figure there were too many pigs at those troughs anyway!!!!
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I find it difficult to connect with others in general. Even when I was better it was a challenge. I try to keep LD to myself because it is uncomfortable for me to talk about it with other people other than my family. People can have a tough time relating to others who are ill for long periods of time.
Hopefully with time connections will happen and I try not to give up Brian66
Posts: 45 | From Ct | Registered: Jun 2015
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lpkayak
Honored Contributor (10K+ posts)
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posted
Hi brian...good to meet you. Sorry its at this wierd post but maybe thats what caught your attention. Im glad you found lymenet. Its a good, safe place to be. Theres a lot to learn on the medical thread and lots of support here. Many of us have been on this .journey 20 -30 yrs...weve been thru a lot and hopefully can help you out
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Lpkayak- Thank you for making me feel welcome! You are correct, this is such a supportive community. You are all helping. Yours, Brian
Posts: 45 | From Ct | Registered: Jun 2015
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posted
Brian, there might also be support groups you could attend - check at the left with Support Groups - click on United States, Connecticut.
I think it's very important that we come out of isolation if possible. None of us asked for this, and we are as deserving of companionship as anyone! And best to hang out with people who understand - which means those with it or those who are aware of it because they know others with it, etc.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Robin- thank you and I just clicked on the support section. I agree, we do all deserve that companionship . Thank again! Thank you, Brian
Posts: 45 | From Ct | Registered: Jun 2015
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
we do have to be careful about mentioning lyme on ANY boards. they think we're nuts, pure and simple.
even had one person say if I stopped thinking and talking about it, it would go away.
unbelievable
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
this is just like learning differences.
since my kids were diagnosed with dyslexia I really researched about it and my husband and I finally discovered why WE had a terrible time in school too!
and if you ever try and mention to someone complaining that their kid can't remember a thing in school or has trouble following directions, etc, that THEIR kid might have a learning disability
it's like you told them you want to steal their kids away or something! sheesh. O gee, I wonder then, why since 1st grade your kid STILL gets a D in class in grade 8 and he has a tutor and everythign????? DUHHHHHH
sheesh. people are so stubborn and blind.
-------------------- 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
I loved your stories - they cheered me up! I actually wasn't unfriended, I unfriended them by mistake. How's that for lymebrain? I'm too embarrassed to refriend them.
They all think I'm crazy so maybe its better this way. I'm still very lonely tho.
I tried a support group but didn't really connect with anyone. I'm such an unusual case: diagnosed with ALS initially. I'm still fighting breathing problems. I say the wrong words all the time and have horrible rage fits, depression, feelings of rejection. I feel like everyone hates me.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Have you by chance been tested for chlamydia pneumonie?
Three years into this Lyme struggle, I got bronchitis and the acute infection cleared eventually but the breathing problems lingered on and on. On multiple inhalers.
Doctors began calling it asthma, but I've never had asthma. And frankly, I was pretty unwilling to take on a new diagnosis!!!
It turned out to be chronic, or recurring, CPN. www.cpnhelp.org.
Apparently a lot of people with "asthma" actually have chronic CPN!
Posts: 1737 | From Virginia | Registered: Aug 2011
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