posted
A general question: How do you cope with the non-lymies that don't understand our limitations?
Of various family and friends that have known my decade-long health battles, I'm down to one person who seems to still understand, and does not expect more from me than my body permits. When I don't do what the others want, recent suggestions include: "fly to Iceland", "join for a 10 mile hike", "put up with abuse", then they gradually withdraw from interacting with me. It becomes increasingly isolating. Socializing online helps a bit, but for me it's not a sufficient substitute.
Other than getting well, I don't see a magic answer, but perhaps there are coping methods that have worked for others, hence my question. Thanks.
Posts: 727 | From USA | Registered: Mar 2006
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posted
I love LF. website. I have met some great friends there and may never get to meet them in person but have a good relationship with many. Do you have a church that has a chronic pain/illness group? I hope to start a skype group so we can have some human to human contact online at least.It is hard but we all care here. I am PM you.
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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posted
I understand too. It's difficult. Being really sick (and looking normal) has led to really idiotic suggestions from 'friends' that drop in on occasion. My favorite one today: "You should just fly down to Florida and have a month vacation!" Me: "really? how about you pay all my bills for that month including travel expenses, then we might have a deal."
I'm learning that you really can't expect people that don't get it, to get it. And its really not our job to *make* them get it. I too am down to about 1 friend that truly is supportive, and my parents/brothers (which is more than even others can count their blessings for!)
Yet, it still gets lonely. I'm trying to focus on giving myself all the care and attention that others aren't capable of giving me, and hoping that some day, i will be strong enough to love others just as much. Once I can do that well, I'm hoping that will open up the door to new people who see a strong fighter. Until then, isolation and occasional socialization it is. It's quite the delicate dance. ugh.
Hang in there! I'm better at using facebook than lymefriends but I like both. I find most of my support right here on Lymenet.
posted
dguy, I totally get what you are saying. For me going to a lyme support group was huge. A real live group that understood me without discrimination. It sucks that from the outside we look completely "normal". I can say this from the perspective of someone who has had brain surgery for a tumor( which was a walk in the park compared to lyme) . While learning how to walk and during recovery with a giant set of staples in my head, I was treated with so much respect. With lyme it has been such a huge fight to convince people around me of the significance of this horrid disease.
Posts: 342 | From northern california | Registered: Dec 2010
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posted
Thanks for the replies. What I'm hearing confirms my thinking that being isolated by others is a common problem, and that all we have left is a Molokai Island of sorts.
Being homebound means attending a support group is unfortunately not a practical option for me.
Anyhow, I'm not sure I'd have much to share with a support group, nor would get much out of it. "Venting" doesn't accomplish much since for me that's little more than rehashing the intractability of our situation. Hearing the woes of others would only confirm the hopelessness.
Hearing the stories of people getting well, now that would be good, but as we all know there's no magic bullet with lyme: what works for some doesn't work for others. Knowing that somebody recovered, escaped from Molokai, is nice, but still we can't use the same method, the rest of us remain marooned.
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