They say, "oh how are you doing?" (that is nice sentiment to ask) I say that I'm doing fine. Then they say, "I heard you have fibromyalgia." So then I tell them its lyme and explain a little about it and then they ask, "have you lost any weight?"
What????

I was never ever overweight at all. I was a runner and athlete who took pride in my appearance....they know that. What is that all about? why do people think you aren't sick if you aren't emaciated and bald from chemo or you have obvious tremors or gait problems (I can feel my tremors and balance problems but no one can see them) or need a wheel chair?

The other day I showed my husband my swollen finger joints. He was shocked. He asked why I never showed him or pointed it out before. I said that the finger joints were the least bothersome of my symptoms but now you know why I ask you to help with jar lids all the time. He said that I should have shown him earlier because it was an objective sign....the only one I have besides a highly positive western blot.

It's not just people's friends and family, but doctors who often disbelieve the patient when there are no obvious physical signs.

This is because Lyme often evades showing up on most routine tests, including things like MRI scans, which the medical profession has come to believe is infallible.

You should photograph your finger joints, and anything else photographable that crops up. This is because the swelling may settle down and you may not be believed in future.

Of course if you are lucky enough to be seeing a Lyme-literate doctor, he or she will understand and believe you even if nothing is showing on routine bloodwork, scans etc. But even so the photos may be useful - he can file a copy of them in your notes in case at any future point you have problems with insurance companies or other medical professionals.

Lisa

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Originally posted by pippy:
I know this sounds whiney (please forgive my whine before I actually start) as we have all been through this before but, talking to relatives I have no clue what to say.

They say, "oh how are you doing?" (that is nice sentiment to ask) I say that I'm doing fine. Then they say, "I heard you have fibromyalgia." So then I tell them its lyme and explain a little about it and then they ask, "have you lost any weight?"
What????

I was never ever overweight at all. I was a runner and athlete who took pride in my appearance....they know that. What is that all about? why do people think you aren't sick if you aren't emaciated and bald from chemo or you have obvious tremors or gait problems (I can feel my tremors and balance problems but no one can see them) or need a wheel chair?

The other day I showed my husband my swollen finger joints. He was shocked. He asked why I never showed him or pointed it out before. I said that the finger joints were the least bothersome of my symptoms but now you know why I ask you to help with jar lids all the time. He said that I should have shown him earlier because it was an objective sign....the only one I have besides a highly positive western blot.

It sort of makes me sad that people see us as complainers and malingerers and nut cases when inside we feel like hell.
Anyone else have this experience with well-meaning people?

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Yes, I totally know waht you mean. I was so mad this weekend when something like that happened to me. I actually got out of the house and went to the store to pick up some groceries. I was really having a bad day and had trouble writing out the check. Finally after the third try I got the dollar amt correct, signed my name, and asked for the date. I joked casually that my brain was little foggy that day. the clerk said, oh yeah, that's right, I read your article. She helped me write out the rest of the check and was very kind. As I left with my small bag of items, I overheard the next woman in line say to the clerk, "well she doesn't look sick to me."

I turned around and said to her, "I may have Lyme disease but I can still hear and I have feelings. Wait until you have an invisible illness that people cannot see, and you will find out how cruel people can be."

I am usually not the type of person to speak up about things like this, but this woman with her fake perky boobs and plastic surgery face just pushed me too far that day!

I happen to have lost weight recently and get angry when people come up to me and say, oh wow, you look great you must be all better!

Either way - weight lost, gained, or in between, people should just be more considerate in general.

Another story - a cardiologist was asked to evaluate me when I had chest pains due to clotting issues. I had reported that my leg was swollen previously but had gone down. He looked at my leg which appeared normal and said, "I see no swelling, ONLY FAT!"

So the next morning when it was all swollen again I took a picture and brought it to him on my next appt. He said, "Are you sure these are your legs?" Somedays, you just can't win.

I don't know what the point is of these silly stories of mine except that I think most people with Lyme have this experience and I don't know that there is an easy solution.

"But You Look Good"
www.myida.org/lookgood.htm

Thanks for posting that link. It rings so true.

Just count your blessings that you only have to deal with strangers saying rude things. My whole family thinks my husband and I are fat, lazy, malingers and hypercondriacts who have now taken our children into our pshycological drama.

I am a bad mother because I sleep too much but no one offers to keep my children. Neither my mother or father have ever kept my kids overnight--and the oldest is seven! I just thank God for my step-children and their help.

My brother (THE DOCTOR) has told me there is no such thing as LD.

And the worst part is my parents. I use to be the prettest of their four very pretty children. It is like I quit exercising and got fat and puffy just to piss them off. Can they not see a corrilation to my pregnancies?

Anyway, it is so hurtful. We just don't talk to them about how sick we are or how sick the kids are. We are just the fat ugly ones at any family function.

I use to be vain--carred about how I looked (now i just try to stay clean)--so I think it has been a good lesson in compassion. But I get it, I get it--can I please get better now?

I mean we don't look sick--right?

L

quote:

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Originally posted by pippy:
What is that all about? why do people think you aren't sick if you aren't emaciated and bald from chemo or you have obvious tremors or gait problems (I can feel my tremors and balance problems but no one can see them) or need a wheel chair? ......

It sort of makes me sad that people see us as complainers and malingerers and nut cases when inside we feel like hell.
Anyone else have this experience with well-meaning people?[/B]

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I think there are a few reasons for this phenomenon. We are culturally programmed by tv, movies, etc as to what a sick and/or disabled person looks like, and that picture is very narrow. Hence there is a lot of ignorance as to what ill can look like.

Then there is fear. I think it scares people to think that someone can look "normal" and yet be completely disabled. If a "normal" looking person can have their life destroyed by illness, anyone can. That is scary. (I also think that is why some people love to tell the sick that they are somehow responsible for their illness due to spiritual or emotional deficiency. That lets the healthy person feel both morally superior *and* protected from the danger of debilitating illness.)

Then there is more fear: the fear that the sick person is actually not that ill and therefore getting benefits of some sort that they don't deserve, or getting out of responsibilities they should be upholding. I think people have always worried about this sort of thing, but right now we live in such a winner-take-all society that people seem more paranoid about this then ever.

I think a large part of the visual is the MTV/MSNBC in all of us these days. We have no time for anything, and particularly no time to take in our environment. If you are bleeding or emaciated, or green then our brain can quickly tell us you are sick. If you aren't, we just don't have time to take the other aspects of the analysis in.

We are also so mistrusting that we want evidence. It's sad that even family desires the evidence.

I also think many people are simply self-centered selfish individuals. I was on the bus the other day, and an older man who obviously didn't stand straight couldn't get a seat, even when saying repeatedly that he needed to sit because his leg hurt. I wished I could help, but I was in excruciating pain myself that day, and near the back.

I haven't read the other responses...that part of the brain is off line right now...and yes....you couldn't tell it by looking at me. I look fine.

In response to your question...ignorance.

Looking back...I was ignorant myself. I thought you had to look sick to be sick.

I also thought the docs must be able to see how broken my body was and that all I had to do was tell them it was broke and I was there for them to fix it.

It took me awhile to figure out that I really did look fine on the outside.

I rode into the next town with a friend just to get out of dodge so to speak.

She said something like she has thought how nice it would be to just stay home and veg.

I wish I could recall exactly what she said.

It was a red flag for me that she still doesn't get it.

I made a note to myself to try writing another article in the local paper on the subject.