I (and I'm sure most people on here) can totally understand your feelings. I go through that all the time, mostly with people who just find out I'm sick or who don't really know much about Lyme or about my case and history. Lately (the past week or so) I've been herxing, not feeling great in the first place, and generally feeling run down. When people ask me how I am I usually just say, "Okay" to avoid getting into the details but some people I tell the truth to - mostly the ones who I think are genuinely interested in how I'm doing. But, I often get "Oh, you have Lyme? But you take your medicine and you're okay, right?" Or, "Aren't you being treated?" "Why aren't you better?" etc. etc.

I find that the people who see me often - my family, roommates, close friends - know much more what my life is really like and are much more understanding when I have to spend a day in bed or skip things to rest. They see how hard I push myself when I'm having a better day (I don't say good because they never are good, just less bad) and they see that I'm really sick. I'm very lucky to have a supportive network of my family and friends and if people don't understand or don't want to or try to understand, I try not to let it bother me.

And coming on here to vent when thigns are going badly helps so much. No one can truly understand what it's like to be chronically ill until they actually are dealing with it for themselves everyday. The people here are great, supportive, understanding. I take comfort in that.

--Annie

That may sound funny at first but there is a ring of truth to it. I guess I want so much to belive I am not sick I wish they were right, the meds make me feel like dirt (for want of a non offensive word) my life would be so much easier if "they" were right. So I have to remind myself that I am sick and I have the right to feel bad the along comes some "gumba" and tells me just what I REALLY want to hear that I am not sicka and I don't need to take these meds that make me feel like dirt and my fight comes out because I have to fight myself to believe it sometimes and give myself the right to FELL sick and BE sick.

Being sick is a very selfish thing it seems, really it is all about me isn't it?? I need to get well, I am sick, I need meds, I need the bathroom NOW!! GET OUT I NEED IT NOW I SAID !!!! ME ME ME But if I don't take that time and let myself heal what good will I ever be?? So I have to fight my selflessness and my willingless to sacrifice myself for my family and be selfish and heal.

Once I am healed those that remained and cared and understood and loved and protected my right to heal, those were my true loved ones, my true family.

I try to not get into it with most people unless they ask then I give short answers and that is it. Perhaps when I am done herxing and healing I will be more willing to try to edjucate but you can only teach the willing.

I found out on mother's day that my mom and step dad think I am making this all up so I can get drugs from doctors.....That was a hoot of a party. "you know all the pain killers you take""" I don't take pain killers I take anti inflamatories, once a month is a lot if I take a vicodin before bed......

They said but all the mood changes we can see it WE KNOW!!! duh I have a brain infection???

See sometimes it's just no use, people will belive what they want when they want. Time for me to get selfish again and heal.

So Leeeannn bottom line is people are as dumb as they want to be, it is not your fault. You have to concentrate on you getting well and what they thing about you is not going to have an effect on your recovery, but you thinking about what they think about you is.

These things have a way of sorting themseves out.

My heart goes out to you

James

this time is tough..most of us on this board have experienced what you are experiencing. Your friends can not know what it is like, nor would we want them to. the ones who have empathy are your true friends, and those of us on this board definately have empathy and compassion for this time you are going through.

Try not to focus on those who have hurt you, by not noting how ill you really are. Focus on getting better. That will take all your energy.

Enjoy the friendships that maintain through this time, and the ones that evolve because of this time.

We will be here for you.

PEOPLE INCLUDING MY HUSBAND WHY DON'T YOU GO BACK TO WORK YOU LOOK GOOD-I HAVE ONLY BEEN AT THIS FOR A MONTH.

B4 DIAGNOSED WITH LYME I HAD FIBRO ALONG WITH 20 OTHER DX'S AND I HATED WHEN PEOPLE WOULD USE THE BUT YOU LOOK GREAT LINE ESPECAILLY DOCTORS YOU ARE TRYING TO CONVINCE YOUR PAIN IS AT A 15 ON THE 1-10 SCALE.

HOW DO i HANDLE IT i TELL THEM I AM AN OIL OF OLAY GIRL AND I CANNOT HELP I HAVE GOOD SKIN BUT WHAT LIES UNDERNEATH IS VERY ILL AND IN A LOT OF PAIN.

THAT IS MY LINE-FEEL FREE TO USE IT.

ALL JOKING ASIDE I HAVE LOST A LOT OF FRIENDS, MY MARRIAGE IS ON THE ROCKS DUE TO THIS LINE OF THINKING. LIKE OTHERS SAID THE ONES THAT ALLOW YOU TO HEAL AND ARE THERE AT THE END ARE YOUR TRUE FRIENDS. I HAVE HAD THOSE SAME PANIC ATTACKS AND I JUST EXCUSE MYSELF AND LEAVE IF I HAVE TO, IT IS ALL ABOUT TAKING CARE OF YOU RIGHT NOW.

CATHY

Educate them!!! Give them literature on lyme,tell them stories about other people with lyme.Amy Tan the author has lyme etc etc.The more they know the better they will understand.

It is really hard I know but I have learnt to accept it from people I know,but the people who really care will listen and learn.

Oh yes, this is something we all contend with. I look at chronic illnesses as a 'weed outer'. In other words, you really learn who your friends are. I've lost a few, but made many.

I think people that aren't affected by a chronic illness just don't know what to say. The whole idea is confusing to them. How can you be sick when you are up and about? How can you be sick if you take an interest in your personal appearance? Their mentality is 'take a pill;you get better'. So seize the moment to educate...

It's like going to a funeral - people say the deceased looks peaceful, lovely, good, etc., you pick the adjective. Well for crying out loud, they're dead! They look dead! People in uncomfortable situations just don't know what to say, so they tell you that you look good. Thank them for their thoughtfulness and move on. I take all the complements I can get LOL!

No you are not crazy - docs will try to tell you that. I've been told the same. One pompous ass of a psychologist told me that I have untreated mood disorder and that there was no way I had lyme or other TBDs...yeah right. Strange tho, my 'mood disorder' has been going away with abx LOL!

Invisible Disabilities

I once knew a storeowner at the beach. She told me one day that she had an invisible disability. I was busy at the time and didn't ask her to define an invisible disability.

I also was at a meeting one day and one of the people there told me that she had MS. I mentioned something about knowing a person who had MS who was in a wheel chair. She wasn't. She said she could sit at the meeting for a short of time, but wouldn't be able to do much more that day. I didn't quite understand. She certainly didn't look sick.

I also had a friend whose son came down with a condition that doctors were having a great deal of trouble diagnosing. He was tested for MS and many other conditions. They finally decided he had CFS after he was well and back to work and several years had passed.

He had gone from working full time to not being able to get out of bed to being able to walk for a few minutes one day around the block and not the next.

He was staying at his mom's because he wasn't able to take care of himself at the ripe old age of 40 something. I stopped by. He walked out of the bedroom for a few short minutes to say hi and then back in. I recalled being confused because he didn't look sick. He looked really well.

Just what does it mean to have an invisible disability. It means that you stay down all day one day in order to walk 5 minutes the next and hopefully sit up at a meeting for a short period of time and then walk back home.

It means seeing someone that you use to work with on your walk back home and have them be confused because you look good and act normal during those few short minutes that you talk to them.

It means going to the doctor and telling them how difficult it is to just take a shower and get dressed and that most days you can't even do that.
Only to have them tell you that you look fine and your test scores are all fine so therefore you must be fine. They suggest a psychologist.

So you visit the psychologist. Perhaps this is in your head. It doesn't make sense. How can you be able to work full time one week and not the next without there being a reason? But, you want to do all you can to get well so you go to see the psychologist.

Only to have the psychologist tell you your symptoms are physical and you need to see a doctor.

I think what most people don't get is that we are able to do things for short periods of time. We have our good days, but mostly our days are very limiting on what we can and can't do. We don't take getting up and taking a shower and going off to work or working around the house for granted anymore.

We know that if we take a shower, get dressed and eat breakfast that it will be awhile before we can do anything else. It is a trade off. If we want to plant some flowers in the yard, we need to cut something else out. We might not take that shower or go for that 5-minute walk we try to do each day.

As one person put it, it is like having a drawer full of spoons. There are just so many spoons in that drawer. When those are used up, that is it. There aren't any more. Some of us have more spoons in the drawer than others. Some of us have people that come over and help us out with things giving us more spoons that day and a big spiritual boost.

The one thing that I have noticed is that invisible disabilities are not for wimps. It takes courage and strength to live with the physical limitations each day.

It also means being thankful that this is all you are battling each day and knowing that there are others who are dealing with much worse.

NOTE: I have not been able to read the other posts, but there is a booklet out called But You Look Good! for about $5,000...oops $5.00.
www.invisabledisabilities.com

Carol

OH BROTHER!!!! Get that all the time! But a little less and less, as I don't think I look so great anymore. It's wearing me down.

My favorite comment yet was one I got just recently from MY NEIGHBOR!!! Her child was in my class for 3 YEARS!! She knows me well enough. (oops, need to edit to say that I taught a combined class of 7-10yr olds!)

I was walking down my road, a very very rare event (first time in the past few yrs) and she passed me in her car. Stopped, rolled down the window told me how great I looked and asked how I was doing.

I told her thankyou, and that I was still fighting the darn lyme, no better yet. (translation, a skyhook is holding me up as I speak) She said, well you know, I've been so spacey, can't remember my kids' names half the time.

I'm sure it's menopause. Do you think THAT might be the problem for you?

[This message has been edited by lymewarrior03 (edited 22 May 2004).]

In fact, when my mother-in-law first started telling me I look REALLY good, I REALLY thought she was just trying to make me feel better!

Now, understand that my husband totally believes and supports me. He really likes my LLMD.

But almost every time we talk, my mother-in-law, with whom I get along and whom I do love, asks me how I'm doing. When I give my stock answer, "I have good days and bad days", she always says, "Well, I'm glad you're feeling better and you look REALLY good!" Hmmmm... ya think she means it?

Do I care? nope... but it does get a bit annoying The only person I need to support me is my hubby and he does. My family totally does too.

We went to a family function with my hubby's family and I had to spend half the time talking about my lyme because one after another, they asked, in separate conversations, how I'm feeling. Very considerate, but I don't like to discuss it that much, because then I have to hear the opinions.

So, I've asked hubby not to tell them when I have an appt.with my LLMD. It comes up in conversation because I travel to get there.

I do believe that they're asking out of concern (and a bit out of curiousity), but I'd rather not go there any more. It's really none of their !%!@#$!@ business!

Now I have NO problem discussing any of it with my family, except I know that my mom doesn't like to see me going through this... especially the emotional neuro stuff.
They believe me and love me and know that I wouldn't make this stuff up.

So my advice would be to avoid discussing it with people who are going to judge you and give you unwanted opinions.

Wow, I didn't think I had this much to say!

Well, I hope this helps. I know reading everyone else's posts made me feel better.

Hang in there!

Pea

Don't have much else to add it's all been said.

I love the "weed-outer" statement though, might borrow that one.

quote:

---

Originally posted by leeeannn:
Does anyone else have this problem? "gee you look great! Are you better yet?" " why aren't you better?" "why dont you take the medicine so you get better" "I had Lyme and I was better after 4 days"...I am SO SICK of hearing this. I have been on ABX for 7 months now and yes, some days I look great and am able to pull off almost a normal day of activities, while other days I am laid flat out on the floor, unable to lift my water bottle for a drink. Other days I have panic attacks for no apparent reason (today sitting outside on a beautiful day with friends having lunch! Wham! panic attack!!), suicidal thoughts because of the pain, unable to put the blankets over me when I climb into bed because I dont have the energy. Why dont people take this seroulsy?! I think I will lose many friends over this for lack of understanding.

---

My dad usually always asks how I am, then when I tell him honestly (but brief and censored version) he usually says "are you sure you're just not bored, dear?"...It is so ludicruous I just have to laugh.

Oh, and then there's my half-sister who insists I just need some Prozac and that it's nothing to be ashamed of, bla bla bla. I don't even bother with her anymore.

Dll