posted
Aside from the horrific physical and psych symptoms...I have experienced other horrible experiences that are hard to describe. Have you?
Some people cannot handle you being sick so they stop talking to you..including best friends.
Some cannot understand the weird symptoms ...including crying when you were always so strong. The fact that you look pysically different..in my case very skinny and lots of grey hair
Then family....that is another good one....my mother will not take off work to help me..not even with my two young kids. She has been more concerned about hitting holiday sales even though I have literally felt like dying over the last 5 months.
The hurt can be very deep on so many levels.
Yet others that I hardly know have brought me dinner, taken me to the doctor, and supported me through this horrible experience..like all of you. This lymenet truly is a wonderful resource for us. It makes you go on with life.
It is definitely a life changing experience. A persons quality of life changes in so many ways!
Posts: 422 | From CT | Registered: Oct 2007
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posted
My younger sister and her husband make fun of me. I finally said to them I'd like to see how amusing you would find it if you were in pain every day.
I told them on my worst days I still run circles around their sorry a$$es.
But other than that I have been pretty fortunate. Although that could be because I've become pretty reclusive over the last year, maybe sort of a defense mechanism.
I did tell one friend to stick it, after he told me I was a hypochondriac.
Just keep remembering you are not alone.
-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
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posted
Lyme has been a friend-filter for me in the past as well. It took my dad years before he didn't think I was a hypochondriac.
I found that a lot of people do not believe me. When I give my medical highlights they think there's no way that all of that could have happened to me.
I have to admit there are times when it really hurts. I think of things like this...I have good day and I have bad days. I'm not talking about good and bad days with the pain.
The pain is always there, but I have good days when I'm dealing with things well, taking the fact that people don't believe me as a compliment that I'm still thriving and surviving enough to fool them, and I'm not saying, "Why me?". And then I have bad days were I don't deal with things so well.
Posts: 49 | From Holly Springs, NC | Registered: May 2007
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Here is a tip thats worth twice what you paid for it. For the math challenged (2 X 0 = 00)
"WE" all get it here!!! Come HERE and talk lyme,vent, talk to people who understand!!!
IF they DONT get it,dont talk to them about it,,,drop it like a hot potatoe!! Change the subject , anything but keep from disappointing yourself!!
Either they 'get' it or they dont,,,you CANT educate and CHANGE the world,,,but you can change the world YOU live in!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
Very good advice, Don. Fight versus flight. In this case, flight.
-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Definitely something we all relate to. I was undiagnosed for so many years and although I'd have a day when I actually felt almost ok, the next, I would have trouble moving out of bed.
Sadly, friends didn't get it and would say I was fine just yesterday. Yes, I was...but in this process, it meant I started having trouble saying I could meet a friend a week from today because IF I was sick that day, they wouldn't understand.
Pretty soon, these friends find others that CAN do these things with them and aren't always "sick". Or I use to hear..."but you don't LOOK sick".
Don's advice is good. People here relate 100 percent and most of what you have encountered, many here have also gone through. So it's a great place to turn when you just need a shoulder to lean on.
Being sick isn't fun and as fetz said, it's sadly a great "friend filter". TRUE friends will still be here, but it will let you see who were the TRUE friends and the part that hurts the most is that most of us don't have many or any TRUE friends.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Like Cathy, I was also undx for many years (figure about 10 at minimum). So I think it was confusing for a lot of people and for me too...
I did lose one or two people I considered friends, but for the most part, I was really fortunate. My SO, my oldest friends and my family all were right there, doing whatever they could to be supportive.
My SO did finally tell me I needed a broader base of conversation. For awhile, I was totally Lyme-obsessed, and at the slightest provocation, I'd launch into a Lyme lecture, complete with Plum Island. I think that got old for people pretty fast.
As I began to improve, I was fascinated to see the detractors all flocking around me again. I didn't run them off, but I haven't forgotten...
Andie
Posts: 2549 | From never never land | Registered: May 2005
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bettyg
Unregistered
posted
yes, monica, lyme filters out fair weather friends!
in my newbie package look right before where all SSDI info starts is:
posted
Thanks everyone Posts: 422 | From CT | Registered: Oct 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
A lot of my friends don't understand either. And I don't really have any friends since I just moved to MD.
A lot of my friends, even over the phone or talking over the internet, tell me to stop talking about how sick I am, that they are tired of hearing it. That they KNOW I'm sick and to shut up about it. I only have one friend that was actually interested in it and let me talk to her about it as much as I wanted.
It's sad how family can become. I have older cousins who I tell about Lyme disease and how it made me so extremely ill for nearly a year, and they basically ignore it and start talking about the good things in their life. It's as if sickness scares them and they try to stear clear of it in any way possible.
I guess it's usually like this -- healthy people stick with the healthy people and sick people stick with the sick people. It only makes sense; we understand each other better than the healthy would understand the sick.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
I have another classic to share..my friend told me yesterday..and I quote..."You lost so much weight..wow that is great."
First of all I was not that heavy before...140 for 5'7'' is not heavy. Now I am as skinny as a rail and I do not think it looks good. I would gladly take back my weight and feel better. I did not even know what to say back...?
It is hard to gain back weight on so much medicine and not eating sugar.
Posts: 422 | From CT | Registered: Oct 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Monica,
Ahhh yes, the one about how good we look. I too was not heavy originally, but I have lost a LOT of weight since the treatment.
My sister who I hadn't seen in over 9 months was telling me how great I looked and she wished she could lose weight like this. I guess they don't see all the muscle we have lost along with the weight.
Sadly, family and friends really don't understand, unless they have been through something similar themselves or else are just WONDERFUL friends.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
I get the weight thing, too. Before I got sick, I weighed 137, and I'm almost 5'8" (and lift weights). Most of what I lost was muscle .... I got down to 123, and hovered around 124-125 for a couple years. Not too skinny, but I looked bad because the muscle had wasted ... my face looked gaunt and pale. If I didn't consistently lift weights, I think I would have lost about 10 more pounds ...
Recently I gained 5 pounds .. hubby just asked me yesterday if I got new jeans .... I said no and asked him why he asked, he said because they look really good -- they FIT!
It irritates me looking at the sickly-looking Hollywood crowd ... that's why people think we look so good, because they think those skinny actresses look so good.
I'm with everyone else .... few friends and few family members who understand.
I find though that people ask my husband how I'm doing. Some people care, they just don't know what to say.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Don,
Very good. I think I need to print that out and post it.
Monica, It took me a while but I finally realized that no family contact was best for me.
One of many of the final straws last year was when my mom went on and on about things she was purchasing for Christmas gifts.
I told her that I was more concerned with having enough funds for food and that it hurts I could not shop for others during this time.
Her comment was yea...you weren't able to purchase me anything for Christmas last year either. Sheesh.
(I had purchased her and my dad a small gift last year, but not this year. I just don't have it in me to be concerned anymore)
It takes me a while to get over comments that have been made and to forgive people.
But, I find that Don's bottom line of changing the world i live in helps the most.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
I can really relate to the friends/family thing. My best support is my husband. I also have a few friends who are sympathetic towards me but that is about it.
I have two sisters that just don't get it. Just recently my oldest sister said that she would like to quit her job because she dislikes it so much...she wished she could stay home and collect a check like I do. I cryed for hours after I got off the phone.
I would give anything to have my career back. I was supposed to continue my education years ago but every time I start planning it I get worse. I will get there some day.
That same sister just called me 2 days ago all upset because her leg is all tingly and she is having back pain. It ended up being a pinched nerve. I wanted so badly to be rude to her about it but I wasn't.
Everyone in my family calls me when they are sick or need advice on what to do. I can never bring up how poorly I feel though.
Just Julie
Frequent Contributor (1K+ posts)
Member # 1119
posted
Having seen this same sentence over and over, for the past 7 years now, I think it should be THE bumper sticker/identifying icon of lyme disease:
"But you don't LOOK sick"
Just think, if every lyme person used this term, either as a "code", or bumper sticker, or whatnot, and it prompted others to ask "hey, what does THAT mean?" we could then give them a short, impromptu reason why we term ourselves in this fashion.
I tell ya, it has come up time and time again. Because after all, we really don't, do we? Most of us, that is. And from time to time, even those who have the misfortune to be continually sick, without a break, do have their "good" days. Where they really don't look as sick as they feel.
Or, here's perhaps a new one: "I don't look as sick as I feel". Now that would prompt some questions, eh?
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I think that is it julie. We don't look sick on the outside.
And all the talking doesn't seem to get through.
Watched Amazing Grace last night.
It seems when the people had to experience things first hand they started making the connection.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
You're not alone. Just last week, my mom called me and asked how I was feeling. when I told her bad, she asked me if I was coming down with something. And here, I thought she actually was learning something about lyme. Bad thing is, she has ALL the same symptoms as me and GOT them two years before giving birth to me. She has been sick all her life.
And the rest of my family? My dad asked me if I was ON something because his wife noticed that I was OFF one night when they took me out. Off? I was herxing my brains out, and this place we were at had
zig zag carpet patterns... on the WALLS. Yes, I was on something... antibiotics....
For me, no one gets it. At all. I do though, and it has given me the strength to keep beating the evil monster. I sat back and realized that I was my own advocate and I have come a LONG way since then.
The only support I have is you guys. No one else understands. According to my family, all I need is a heart doctor and a big old dollop of zoloft for the rest of my life... just like my mom.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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You would not even believe the experiences I have had. I am more convinced than ever that only another long term LE patient could really understand me as a person.
A big problem is the prepondernence of neuropsych symptoms such as irritability, and in the past paranoid and even delusional behavior prior to diagnosis. This in combination with the sometimes apparent 'healthy' appearance of a neuro patient can turn people off. Especially so if you are an intelligent and capable person {Monica being a professor} Then, they have the rantings of steere, IDSA etc. to confirm their suspicions and prejudices which is that really you are just a bad apple, a chronic malingerer, a nutcase, a borderline personality, a parasite, etc.
Oftentimes, the excessively long pre-diagnosis stage in combo with psych issues has already created a negative situation for the chronic lyme patient, in that he or she has already been 'abused' by relatives etc. who concluded that there was nothing really wrong with you and engaged in a pattern of abuse and ostracization prior to lyme/TBD diagnosis. Because of this, there is a significant psychological hurdle for them to overcome in accepting your symptoms or legitmacy of diagnosis, because it may entail an admission to themselves that they betrayed you when you needed understanding and compassion.
In my case it mattered not that I had positive blood testing, bad spects, etc. Not to mention a malfunctioning pituitary gland and others serious issues. people see what they want to see. I had a whole series of problems. I caused problems in relationships because I didn't feel well and was under a great deal of stress. An encephalopathy is a brain disease and directly effects behavior.
Eventually I've had to write off everyone but my parents and my brother. I have a cruel and vicious sister who constantly snipes about me to others and lectures me on my illness behavior. She is obsessed with money and apparently fears that my continuing disability might impinge on her inheritance.
She has a nice home and a family and is in excellent health.
Every person I've ever known who I thought was a friend I've had to cut off or more often visa versa. I haven't been on a date in six years. I haven't had a meaningful conversation with anyone aside from parents in many months.I've been stabbed in the back by doctors, relatives, 'friends', psychotherapists, and many others. I've been deficient as well, but much of that is the inability of a lyme patient to maintain balanced relationships. You are living in a world of exhaustion, confusion, fear, and often emotional and/or material poverty. This is not the universe of the healthy.
Part of it is that although I acquired this crap in CT, I'm stuck in rural Oklahoma which is probably the worst place of all time for a chronic lyme encephalopathy patient. Another part of it is that I was sick for so long...enduring several psychiatric diagnoses along the way...that, over time, my relationships with friends and family deteriorated due to illness constraints. The already frayed ties are easily cut.
Fortunately, knock on wood, I am feeling better finally and hopefully this progress will continue so that I can go back out into the world and move someplace far away and start over.
Sorry for the rant. It's my way of saying 'I feel your pain'.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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posted
Thanks, I am very happy that you are feeling better. By the way I loved your sentence..."because it may entail an admission to themselves that they betrayed you when you needed understanding and compassion." THAT IS THE TRUTH My friend said two days ago..oh you did test positive for Lyme...we all know this means nothing.
Posts: 422 | From CT | Registered: Oct 2007
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posted
Oh yeah, I'm a lyme psychology expert! Lol. You know, because lyme patients tend to be isolated and have the additional hurdle of not having their suffering recognized by society due to the IDSA garbage...I think they tend to be more insightful and compassionate. I've had to work out a lot of stuff on my own. I feel like I am an alien out here!
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I have learned SO MUCH from Lyme, I am truly blessed, now I know who I am better now, and who I want to be, and who I want my friends to be. I htink Lyme has taught me to make better choices and be more active in my choices than I used to be. Pre-Lyme I let things HAPPEN more, now I make them happen the way I want more, including friendships.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Peacesoul
Unregistered
posted
This is a great thread....
I've not lost any friends, but there is one close friend that just doesn't get it. I mean, I do get comments from my other friends and family, but those are to be expected.
My boyfriend is probably the least understanding. He tries so hard to help, but he just doesn't get that I feel sick a lot.
I think if lyme got as much respect as cancer, the outcome and attitudes would be much different. But when my friend has Leukemia, she lost other friends as well. So who knows!
In my opinion, the friends that are lost, well good riddance. Who needs them anyway
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