posted
I juss feel like when people look at me they cant see me, i know it sounds weird but its so uncomfortable! Has anyone ever felt this way? is this part of depersonalization that lyme causes?
-------------------- Neuro-Lyme (possible bart) Symptoms started Jan 2011::Diagnosed Feb 11th,2011:: *Anything is possible thru God who strengthens me* Posts: 775 | From Pennsylvania | Registered: Feb 2011
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Sorry you are feeling awful.
Do you have Bartonella?
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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posted
No, right now I feel like EVERYBODY sees me. Every where I go I get stared at the whole time! My friends even stare at me when they see me because of how different I look.
It is quite uncomfortable!
Posts: 265 | From Oregon | Registered: Aug 2009
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I have started communicating via the printed word when possible as it seems that when I speak what I am saying is not heard.
Even with the printed word, I still am not getting the point across many times.
I have had a person standing be helped first many times although I was there before them in my power chair.
I kind of understand that....the standing person is right in their face and at eye level.
yes. many times I have felt invisable.
On the other hand, I am very visable when out and about in my power chair with my service dog.
I get out about 3 times a day for an average of maybe 10 or 15 min.
People say tell me all the time that they see me out all the time and all over town.
The ask me just how long my power chair will last. I always tell them longer than i can last.
I find that amusing. Not realistic...but amusing.
Because of Rosie, I am very visable. Even when it is not Rosie and I but another power chair and service dog.
Rosie is black. The other dog in town is white. They still get us confused.
Now, there is another person in town with a german shephard service dog and power chair.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
To answer your question...even before getting the power chair and the service dog...
being invisable was one of the first things I noticed and found mind boggling.
I would go to the counter at the local pharmacy in town and the clerk would acknowledge others.
I started going to another pharmacy in town because it was such a problem.
The other pharmacy you needed to stand in line so things worked better...that was when I was able to be on my feet long enough to walk in and get the meds.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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onbam
Unregistered
posted
Reminds me of this satirical piece, written by a patient:
::The American Lyme Disease Foundation held a rally today in Central Park to express support for a small cadre of rheumatologists who have mistakenly characterized lyme disease as an inflammatory joint disorder.
"Just look at all these patients", gushed David Weld, president of the ALDF, motioning toward an empty lawn. "You know, one amazing thing our scientists have discovered is the ability of the lyme disease spirochete to make people invisible."
Allen Steere, a rheumatologist at Harvard, and Mark Klempner, a researcher from Boston University, both gave brief speeches thanking the invisible patients for their continued support.
"Thank you, thank you", said Steere in an emotion-choked voice as he stood at the podium and paused while the invisible patients honored him with an invisible, silent standing ovation.
Later, Steere added, "This is an incredible moment for me. I spend so much time in the lab, it feels really good to get out and see how my research is having an impact on everyday citizens. Usually when I go out in public I have to take bodyguards and wear a wig, so it's great to be in an environment surrounded by people who love me. Even if they are invisible."
Following Steere's moving speech, Klempner addressed the invisible crowd and thanked them for helping him rig lyme disease research and enabling him to get a prestigious job at Boston Univeristy involving a $128 million grant.
"Without you, none of this would be possible", Klempner emphasized. "When I got together with Dr. Steere and Dr. Wormser and we discussed exactly how we were going to commit scientific fraud, Dr. Steere mentioned that we could count on the support of all these invisible patients he had studied in the past. At first I was skeptical, but he turned out to be 100% correct!"
After the invisible crowd silently cheered for Dr. Klempner, patients and doctors intermingled as refreshments were served.
"you see, this is what I am talking about", offered Steere as he gestured toward a sapling oak. "Do you see anyone here in a wheelchair?
None of these patients have evidence of neurologic disease." As the invisible crowd dispersed, Weld added "it really makes me feel good to know how much our efforts are appreciated by lyme disease patients."
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posted
Yes, I feel like I'm invisible a lot of times. Other times, I feel like everyone is staring, as another poster mentioned.
The thing that irks me the most is when I'm talking and get cut off, talked over, or totally disregarded as if I'm inaudible, on top of being invisible.
Posts: 14 | From Illinois | Registered: Feb 2011
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posted
Yes, I feel like I'm invisible a lot of times. Other times, I feel like everyone is staring, as another poster mentioned.
The thing that irks me the most is when I'm talking and get cut off, talked over, or totally disregarded as if I'm inaudible, on top of being invisible.
Posts: 14 | From Illinois | Registered: Feb 2011
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
That's an interesting way of putting it. I suppose I do feel this way. I describe it as feeling like I am floating or very drugged. I'm completely disengaged most of the time. If there is a moment when I am engaging in a task or a conversation, I feel so happy to be alive at those moments.
I suddenly understand the words of Descartes " I think therefore I am." When I don't think I don't feel alive.
I don't know if that made any sense.
Posts: 2232 | From USA | Registered: Aug 2009
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
on bam...smiling and shaking my head. Thanks for posting that.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
On the other hand, yes I do feel invisible sometimes. When I talk nobody listens. Nobody seems to hear.
Everybody says they can't hear me, talk up. I don't have the energy to shout nor the noise tolerance. I end up not speaking often when I feel like saying something because I either get ignored or interrupted or told to speak louder.
Also, I feel invisible sometimes in the sense that people disregard my feelings or my view of something because they know I am sick and that my perspective is skewed. This tends to make me angry.
Posts: 265 | From Oregon | Registered: Aug 2009
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