posted
So I'm fairy new to the Lyme world and am still trying to navigate my way through.
I've been sick for so long and although it's nice to finally have a diagnosis and a treatment plan in place, I feel like I'm only starting to take everything in (and still not coping with it all that well at times).
One of my biggest struggles right now is what to say to family members and in-laws. I have to admit I'm not the best communicator to begin with. I also think that I have some level of shame that sits beneath the surface.
I realize that how much you tell and what you share is up to the individual and dependent on the relationship.
What do you say when someone asks "how are you?" I've been trying to stick with "hanging in there" or "doing the best I can". And then I change the subject.
The way I look at it, I don't want to stay focused on my symptoms and talking about something, anything else takes me out of my one head for a while.
At the same time I sometimes feel like I'm being a "phony" because many times I'm not doing well at all but I don't want to spill it all out. It's tough. I also can't take another well meaning "pep talk" or a "I know exactly what you mean".
I will tell you that I haven't been able to participate in the holidays and family events for a few years now due to symptoms of neurological lyme.
Due to the apathy that I experience, I can honestly say that I don't really miss seeing people right now. I know some of you can relate to that but it's not really something that I can tell the average person.
Posts: 4 | From New England | Registered: Nov 2013
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
From years of experience. I know you want to educate individuals about your condition. But believe me when I say they really don't want to know nor will they understand lyme.
I have tried for years and years and I have several family members in the medical field. They don't believe in lyme and no amount of substantive evidence will convince them otherwise.
All you will do is stress yourself out and alienate family and friends.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
You are certainly not alone, and unfortunately the lack of understanding and compassion it is one of the most difficult things you have to put up with with this disease. I think you should try to explain the situation to them at least once.
They will not understand the magnitude or the severity of the situation, but it may help if you at least disclose what you are dealing with. I do think it is probably a futile effort to get them to understand everything completely because they themselves are not experiencing what you are feeling.
This is where support groups, lyme net, and super compassionate friends come in. You rely on them to get you through. Remember that there are countless other individuals out there in exactly the same situation as you.
As for the pep talks etc. you cannot let that get a hold of you. The stress, anger, and frustration that you are feeling is only going to contribute to you feeling worse. Stay calm and remember that you are not alone.
Everyday more and more truths regarding the real lyme come out. You are unfortunately at the beginning of the epidemic before anyone really comprehends the magnitude of this disease, but that is changing everyday.
Stay in the moment, and remember your only real task is to get yourself healthy. Find a good doctor, control what you can control, stay the course, and you will slowly begin to return to health
Good Luck!
p.s. you should allow private messages, you may get some one on one help/correspondence
Posts: 169 | From The Poconos | Registered: Jun 2011
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
I agree with Pony, I would try one time...
Be prepared for disappointment!!!
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
Thank you all for your responses. I apologize sometimes my brain fog makes it hard to get the words out correctly and I don't think I made myself clear in my original post.
I'm not really interested in educating friends and family about Lyme, that's not my intend. I'm not even necessarily looking for understanding or compassion from them - which for the most part I already have from many.
I'm just trying to adapt to my situation.
I'm simply trying to learn how to "live" with chronic illness, without letting the illness define me or my relationships.
I have no anger, frustration or stress from any of these relationships. I just don't know how to "be". Being disabled I've lost so much of my identity that it gets confusing.
I went from being an active, independent person with a career to a disabled, dependent person - it's been quite a change. Conversations used to be easy but know I feel I have nothing to offer and refuse to let me illness be the center of the conversation.
Again sorry if this isn't making sense. It's been a long day. Maybe the tite of my original post should have been taking with people in general.
Posts: 4 | From New England | Registered: Nov 2013
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I completely understand the difficulty that you're trying to communicate.
I try to talk to others about things we have in common to take the focus away from Lyme.
For example, my sister-in-law and I talk about TV shows we both enjoy. She does check in about my health and understands the best she can. I try not to let it dominate the conversation (though difficult because health can be all encompassing).
Thank God for caller ID. I just don't pick up the phone if I don't have it in me for small talk.
The other thing I do is try to ask the other people questions about what's up in their lives.
It's very challenging to talk to normal, healthy people. I do find it unrelaxing unless we have something BIG in common.
Posts: 2839 | From California | Registered: Jul 2012
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
All good points.
I am apathetic also, so not being social is my first choice most days now.
I try to make sure I look run down on the days I feel run down. Folks don't ask how I'm doing on those days which is good. They can see it.
Also caller ID is good-I don't answer the phone on bad days.
"Still ticking", "OK", "Beautiful Weather!" are my go to's for responses.
Sometimes I can head off the "How are you's" by complimenting someone before they have a chance to ask me.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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