posted
How does everyone help family, friends etc.. to understand how your illness makes you feel and why?
My family (especially my father.) doesn't understand Lyme disease at all..let alone co-infections etc..Constantly saying that they've got this ache and that ache...but they still work etc...Does everyone else get this too?
It got so bad today that: My father called me today cuz tomorrow is my birthday. When I told him that I wouldn't like to go out to a restaurant b/c I'm never hungry, usually feverish, and don't like to watch other people drink and smoke in front of me.
This sent him into such a rage that he yelled (As usual.)why don't you just curl up and die then?!
I asked him to repeat it in case it was a mistake...but he said "I know exactly what I'm talking about, but you are just out-of-your-mind! Go curl up and die then!".
So my entire family just took a crap on me. There goes any family support.
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
It sucks so bad that noone understands, except fellow lymies? I wonder if people with other diseases get this reaction to?
I hate when people ask me how I am, because I have a hard time figuring out the correct way to respond! If I say I have a headache, they say they do to, or my knees hurt theirs do to.
You can't go into it, saying yeah, but do you have tingling sensations in your head, or a numb right arm, or twitching that is migrating to different limbs throughout the day...
I feel for you and hope you find support somewhere. At least we have all of our lyme friends! We all understand.
posted
My father would say: You gotta at least TRY to go out and have fun!!
But when you don't hear the part about getting better being the most important thing...or taking your meds etc.. and you ONLY hear the part about going out and having fun being the important thing....makes me wonder if they really believe Im sick? or Just want to have someone to hang around with and have fun themselves.
Could a parent be that selfish? Or is it a mistake?
Or am I simply insane...that way only 1 person is in the wrong.
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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Thanks for the reply. Also, for the "happy b-day". You're the first one to say it. I'm not crazy or acutely lazy or even a hypochondriac.
It seems that these people that have problems with lymies being sick are simply into themselves more than others.
If they can't comprehend it, then it can't be real...and they don't want to take the time and effort to learn. Thats being kinda selfish isn't it? At least "proud to be ignorant"?
Then some have the nerve to act like they don't want to get your germs on them? If Lyme is a farse...why don't you want to catch it? Or is it they don't want to "catch" hypochondria?
It sounds like they all want to compare you to someone thats gone thru some hardship...so therefore you should suck it up too.
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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posted
Try bringing up the fact that other people living in the same house w/ someone that has Lyme have a very high incidence of Lyme as well.
I said that to each of my family and they all responed negatively with some signs of anger or frustration.
I said, its something to at least MENTION to your Dr. They might decide to test you. It only takes a couple drops of blood. NO, NO NO! There's NO WAY I have Lyme disease! I feel fine, I've always felt fine!
Perfect denial. I couldn't have written a script for a more perfect act for denial.
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Happy Birthday James.
I'm sorry that your Dad doesn't get it. It is hard for people who have not gone through this to understand.
Come here for support.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
I avoid people because I don't want them to ask "how are you". The ole' "you look good" with a certain tone, meaning..... yeah right you're sick, suck it up.
I've struggled for 18 years and my parents never understood. This past week I was diagnosed with CIDP, now they believe me.
They've offered to go food shopping and clean. Of course I'm desperate so I said sure but really I would like to say something nasty.
My mother-in-law still thinks I'm faking it. That really makes me angry. She also justifies her son walking out on me and the kids because ya know, I'm always sick it must have been so hard on HIM.
I'm venting, time for a trip to the counselor. xo Be well all you fakers! Time to medicate.
-------------------- simplify.... Posts: 96 | From Rhode Island | Registered: Jan 2008
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echostef
Unregistered
posted
You are not alone!
Both my husband and mother are completely critical and non- supportive, even though my daughter and I both tested strongly positive for LD and Babesia.
If I wasn't broke and too sick to work, I would've left my husband by now.
I made the mistake of having him take me to an appointment with an ignorant infectious disease doc last year, right after I found out I had Lyme. The stupid duck told me that if I had already been on doxy for a month, then I was cured and the rest was in my head. He referred me to a pyschiatrist.
My husband has claimed since then that there is nothing wrong with me and that he has aches and pains just like me and still manages to work. He says my LLMD is a "witch doctor".
He also says my 8 year old daughter needs to "suck it up" and go back to school, even though most days her head hurts so bad she doesn't get out of bed.
And my mom, if I tell her I have a headache, will claim she has one too and then will proceed to give me a list of all the things she has accomplished that day...
Whatever I tell her hurts on me, she magically also has the same symptom and says she can't understand how she can still function when she doesn't feel good, but I can't.
They just don't get it. It makes me feel very alientated, frustrated, and alone.
I'd give ANYTHING to feel better, or at least make my daughter well.
Glad I have this website. No one else even tries to comprehend what we are going through. I've tried to give my husband info on LD, so he can at least understand, but he is still convinced that my sickness is all in my head
posted
HAPPY BIRTHDAY TO JAMES, who used to chase fulltime for dames! But he has gotten quite tame and not involved anymore in those games. So now we are back to names .... JAMES!!
an original by BettyG
James, here's to healthier and happier years to come!
would your families watch UNDER OUR SKIN dvd with you? could you LOCK them in your home where they couldn't leave until it was done?? Betty
This "letter to normals" is circulated in fibromyalgia circles but the symptoms are often identical because chronic lyme can turn into fibromyalgia. Just substitute "lyme" in place of "fibromyalgia" http://www.fmscommunity.org/lettertonormals.htm
LYMEDAD'S LETTER TO FAMILIES OF LYME PATIENTS...OUTSTANDING! PRINT & GIVE TO FAMILY MEMBERS!!
Topic: Open Letter to Families of Lyme lymedad Frequent Contributor Member # 8074
posted 20-04-2007 03:52 PM
Dear Family of a Lyme Disease patient,
I am writing this letter to all parents and family members who are witnessing their children, wife, son, father, aunt, uncle, cousin, etc. struggle with Lyme Disease.
I am one of you.
For more than 6 years my daughter has suffered through this ugly, dark disease.
She has experienced horrible migraines, severe joint & muscle pain, nausea, vomiting, extreme fatigue and loss of her ability to speak or think logically (these are just a few of her symptoms).
She has become unable to work. She has been forced to move back into our home at the age of 23 (she is now 29). She has virtually lost her 20's, one of the most productive and exciting time of her life.
We have taken her to every known medical specialist in southern California as well as three different General Practioners.
She has been diagnosed, at differing times, as having Chronic Fatigue Syndrome, Chronic Pain Syndrome, Fibromyalgia, Lupus, Psychosis, and MS (please notice that all of these are either syndromes or descriptions of symptoms; none of them are diseases).
For the first 4 years of her struggle, I was not a good parent, even though I thought I was.
My daughter didn't have any outward sign of her illness. She looked "normal". After many, many blood tests, MRIs, CAT Scans, x-rays, psychological tests; everything came back "normal".
I was, and sill am, one of the world's biggest cynics and skeptics (I'm originally from Missouri - so "Show-Me").
Surely if you are as sick as you say you are, there must be something that will show up in your blood tests or on x-rays.
You can't possibly be this ill and not have something tangible to show for your symptoms.
You're either just faking it or your lazy or it's psychosomatic or your trying avoid the real world.
Get off your lazy butt and get some exercise or get a real job or face up to life like the rest of us.
That's the way I approached her illness. It's time you took control of your illness and will yourself well.
I was so far off-base. It took an outstanding Lyme Literate Medical Doctor to show me the error in my approach with my daughter and to show me the reality of this disease.
My daughter and I have both suffered because of my ignorance (I'm not saying all of you are ignorant, I'm saying I was ignorant. To be ignorant simply means to be uninformed not stupid). I am still working to rebuild the closeness we had before Lyme.
Lyme Disease is real, the pain is real, the problem with logical thought is real, the lack of energy is real, etc., etc., etc.
If your child or family member has been diagnosed with Lyme Disease, they are just as sick, if not more, than someone who has a more "traditional" illness, like Lupus or Multiple Sclerosis or Cancer.
I've done all the study, I've been with my daughter at all of the appointments, I've watched the misery she's been through.
Hey they just can't help the way this disease treats them. It's not their fault.
We as family members need to be there to support them. They don't need our pity. They don't need our skepticism. They don't need our criticism.
They need our understanding.
If you as family members will take the time to study this disease, you'll see that it is real. The little buggers who have invaided their bodies are real and they are making our loved ones sick.
Please spend the time you currently spend trying to figure out why your loved one acts the way they do really studying the disease. There are volumes being written on the internet as well as new books being published everyday on this disease.
We can't possibly understand the way they feel, not unless we have the same bacteria in our bodies.
My daughter has a long way to go before she's back to where she was 6 years ago. She has a lot of work and pain to endure before she can get there.
She certainly doesn't need someone who claims to love her causing her any more pain than she has already.
Families. from one who has been in your shoes, please let them know you love them.
Let them know you're there to help them.
Let them know that there's no way you can possibly understand their pain, but that you wil try to understand their illness.
I think one of the most important things I've come to learn is that my daughter's disease may be God's way to teach me a lesson.
I'm not saying God gave my daughter Lyme Disease, but He may be using this disease to teach me how to love, how to be patient and how to be more understanding.
I wish you all good health and I hope that none of you will ever have to experience what our Lyme Disease loved ones are experiencing.
Sincerely,
LymeDad
DAR'S TOY STORY; outstanding for family, friends, etc!
This was written by a friend of mine. He asked me to post it here. We hope you like it!!! Lymetoo/TUTU posted 5-11-07 *********************************************
The last essay I did was how I feel having Lyme disease and all the other things I have wrong going on inside me. Last night I was awake at 3 a.m. and once my mind gets going, I'm all done sleeping.
So now you know how I feel, but you don't know how we feel looking back at all of you who are healthy. All of us who have immune-compromising diseases such as Lyme, Crohns, CFS, ALS, Alzheimer's, MS, non Hodgkins lymphoma, muscular dystrophy, bipolar disease or any other chronic illness.
People with chronic illness face two hurdles. One is the illness itself, and the other is the perception others have of them because they are ill. The illness becomes their identity, essentially making them faceless.
People have no clue what it's like to be us! Well, now you will. See, all of us with something broken have been taken out of the real world, or the working world and we just can't explain what it's like.
Well, imagine for a moment that all of us are toys lying on the living room floor. The toy box is next to the kids' bedroom doorway. Mom and Dad say, ``OK, kids, pick up all your toys and get them into the toy box and back into the closet. It's time for bed!''
OK......and in go all the new toys from Christmas and birthdays past. (That would be all of YOU!) Along with the newer toys goes a truck with the front tires missing, a car with the doors off, a matchbox car that has no hood, a 56 T-Bird without the top on it, and the trunk is missing.
Then there's that ole tractor that once had a bucket on the front and a back-hoe on the back, but somehow they're gone and and broken off.
Susie loved that doll, but over time her head got broken off and one arm was missing. GI Joe has seen better days, because his left arm and his right leg have come up missing.
Johnny's plastic train with 9 cars was the best thing last Christmas, but 3 cars are missing and the caboose has no wheels. Now when the toys come back out another day and get dumped on the floor, there's all the good ones that are played with right away. All the ones that have parts missing (That's all of US!).... Well, nobody plays with them because they're defective. They can't roll because the wheels are missing and parts are long since gone.
But they are still toys that the kids got and don't have the heart to throw away. So even though we get to come out and sit on the floor, nobody plays with us because we're not ``whole'' anymore.
But we still get to be with all of you and get to watch and see what's going on! And then there's lots of times we never get out of the toy box. There's days on end that we just sit on the bottom of the toy box, because we can't do the things that we once could, and nobody needs us anymore.
Then it's back in the closet and the door is shut, and it's dark once more in our lives. Not that we're not alive, we just can't fit in anymore and have to wait till everyone comes back from the real world and lets us out from the dark closet and we just sit on the floor and get to see what y'all are doing all over again.
We know we have parts missing and can't roll with the good toys. We know we'll never fit in with all the toys that have all their parts and are newer and shinier and we expect that.
Thank you for not throwing us away though, even though we can't compete with the new toys. Some of us do better than others. Those with only one wheel missing get around better than the ones with all the tires missing.
And we have gotten used to the dark closet when all of you get to go out in the world and do whatever y'all do. We just know that we can't do that anymore.
We used to be able to run with you too, but somehow got some parts missing and we're `Stay at Home Dars All Day Long', like my new Lyme song goes. We've even got used to watching all of the good toys go roaring up and down the carpet, and some of you even get to go outside and play in the sandbox too. But we have to just stay where we are because that's just what has happened to some of us, and tonight it's back in the toy box and into the dark closet.
There may be a cure for some of us, but it's hard to get the big companies to send those few little parts, like hoods, trunks, wheels, heads, arms, legs, and missing eyes. They are just too busy to take time for such little things like that.
We accept that too. And if you look at us just right, you can't even see there are parts missing and you think we should be able to come out and play.
It looks like we should be able to keep up with all the good toys, but it's so hard being stuck in this old broken frame, knowing we once were part of the big picture and had something to offer, and could go places.
But no, we're dependent on everyone else to help us out of the toy box and back in again in the dark closet. You can't imagine how lonely it gets in there, day after day, all alone, knowing that all the healthy toys get to go out and play.
What makes us feel good though is to hear stories of how we would rip up and down the hallway and across the family room and into the kitchen. Or how much sand we could dig on a good day in the sand box.
Those are called ``memories'' and all of us broken toys have lots of them, because that's all we have left! We really appreciate all the things all of the good toys do for us and hope they all understand it's not our fault. We just got stuck with weak or broken parts!
Hopefully my broken-toy story will help all of you understand what it's like being us. Up until last night, I didn't know how to put it either. But somehow I think I got it right now. It's just the way I feel, stuck at home trying to do the best I can with what little parts I have left.
I once had ``big dreams'' of being a real country music star, with my songs on the radio, and the videos on TV. You can plan your career, plot the success ladder all you want, but you can't count on your health to be there for you.
Not everyone gets to stay healthy. There are a lot bigger guys than me that were taken to their knees by a health problem and taken out of the game. I'm just glad I can do what little I still can. Like the ole saying goes, we don't have to look too far away to find someone that would gladly trade places with us.
Be glad what you do have! There's a lot of people worse off!
Written by Darwin Schmitz, Texas Dar & Pure Country Band.... edited .3.15.08 per Darwin's request PS..Dar has enjoyed the thank yous from all over the world!
posted
James, i got the DVD of under Our Skin and sent it to my husbands family...they can't believe he is really sick...its been 8 years and only the last 2 we found out it was lyme...so when they watched it i got a call and his sister was crying and said she was so sorry she didn't believe he could be that sick from a tick bite...she made her husband and kids watch it also...now i'm sending it to more people who can't understand... i went to a showing of it and sat there and cried myself...it was like what we've been living through these years...but it also made me feel good to know i'm not alone in this battle....hang in there and take care of yourself first..others will come around they just can't face it...they, thank God, have never been this sick and can't or won't understand...take care
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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posted
Unfortunately, you can't make people do anything. I really attribute peoples reactions to ignorance, indifference and a bit of narcissism.
I have been diagnosed with MS since 2003 and then last year was hospitalized with "atypical" Ms symptoms. I was told that I may not have MS and since then have been trying to get a correct diagnosis. The last 6 months or so I have felt worse, been in bed more and missed many family functions.
Even with a "real" disease like MS, people judge you on how you look. And to be honest, I used to do the same thing years ago when I was ignorant. When I saw someone getting out of a car parked in a handicap spot often I would think well they don't look handicapped (no wheelchair etc)
Now I understand that how a person looks in no way reflects how they feel. I am sure memebers of my family think I am a hypochondriac and lazy.
A couple of weeks ago someone told my parents about Lyme and gave them the UOS DVD. He is a lawyer who said he was sick and out of work for years. And recounted the days he couldn't get out of bed.
My Dad seemed amazed to hear it but he also got some new insight into my problems. He often told me don't stay in bed all day (duh! who would really do that if they didn't have to)
Unless someone is in our shoes how could they really understand. At least my parents try and our supportive. My other relatives, well who knows what some think.
I have my first appt tomorrow with an LLMD and can't wait. My parents are driving me because my husband doesn't even know I am going. Like another post said that if they had the money they would be gone. Well, that is my situation. Even with the MS, which I don't think I have, he never got involved.
I bugged him enough to get him to watch UOS. He said a couple sentences but that was it. After all the suffering I have endured the past 5 years alone, many hospitalizations for surgeries and other maladies, you would think he would be interested.
My husband said that when the doctor says I have Lyme then he will learn about it. Which isn't true if history is any indication of his future behavior, which it is of course.
Being sick is something noone ever plans for, especially with a chronic illness. If I had a nickel for the things I have missed out on because I do not feel well, I would be very wealthy. I don't want anyone to feel sorry for me but I think your partner should be your greatest source of support.
I know of several women with MS that are bedridden etc and their husbands are wonderful even though at times they are naturally overwhelmed.
The only thing we can hope for is that we will get better and then the hell with those people who were ignorant, indifferent and narcissistic.
posted
I think what most people really don't get is that yes, everyone has headaches. and joint pain. and fatigue.
But not every single day for years.
My husband asked me what it's like, at some point. And I told him to think of the worst flu he'd ever had, and then imagine having it for 6 years.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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posted
every DR. would ask my hubby what is you head pain form 1 to 10 he would always say 15...now he wishes he could have a few days with a 10...before he was on treatment his pain was most times about 8 to 15...he would like or take 6 to 9 and just live with it...but he is hanging in there for awhile longer...we can always hope...
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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You never know, his anger towards your illness may be a compensation for what is going on with himself. Parents hate to tell their kids that they are not well.
Not trying to make excuses for him, just a thought.
My family didn't understand until it happened to them or someone in their immediate family. (grandchildren and children)
With my own husband it took looking at the results of a spect scan to really "get it".
I too was misdxd with MS. When I was in my early 30's and had 3 very young children, acquaintances at playgroups just did not get how difficult everything is for someone chronicly ill. One person asked what MS was, and after explaining how the illness attacks the nervous system her reply was "you mean it is something real, not an imaginary type symptom?" Her way of saying - so it is not all in your head?
My point is, lyme has its "unique" disadvantage in explaining to people how sick you are b/c the medical community is also ignorant. But other chronic illnesses are also misunderstood.
Find those who are supportive, and I know it is not easy. The people that will be there to laugh with you, and cry too. I am not saying that there will be many, quality over quantity.
Wishing you a peaceful/pain-free Birthday.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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ajisuun
Unregistered
posted
This is a tough one. I am pretty sure my parents don't understand, but I excuse them because I live in Africa and they are in the U.S. They haven't seen me in 4 years and my symptoms have only been bad in the last 3 years. I am going home next year though and will be there for a year. I am hoping they will "get it" when they see it for themselves. My symptoms have been improving slowly so I am hopeful that they never have to really understand how sick I have been. When I mention something about chronic fatigue, they say something like, oh we get tired easily too. I have to laugh, they're in their eighties and I'm 45! Somehow, I think I should have more stamina than someone in their eighties, but the fact is, I don't.
I am extremely fortunate that my friends and co-workers that see me every day do understand and cut me a lot of slack. If they didn't, I would have had to go home a long time ago.
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Wow Dizzy, Do we have the same Mom? My mom is the boss where I worked (notice the ed at the end). One day I showed up at work and all the residents were sooo upset. My mom had announced to everyone that I had Lyme and it was chronic. They all felt so bad for me and for HER cuz she was going through so much!
I couldnt believe it. She never had an ounce of compassion for me, never. One day when she had a really bad cold, she told me, is this how you feel every day? I feel so bad for you I will never forget having to work while your sick.
Guess what, she forgot. The next day. She was irritated cuz I didn't wear makeup to work and I said, I was too sick to put it on, my hands are too shaky and weak, remember I have Lyme? And she said, I believe me Im well aware. Like it was such an inconvenience for her.
Sorry didn't mean to go on and on. Like I said before thank God for eachotehr to talk to! I don't think I could of made it without other fellow lymies to talk to!
posted
Yea, I can relate. People think im just a Hypochondriac. They don't even know. I wish I had a more recent positive test for lyme to show them, but the truth is some people just don't care. They have their own life and own problems. They are uneducated about lyme. They can't see past what you look like on the outside. I couldn't tell you ho w many people I have heard talk about a disabled person. "well, I seen him on a ladder the other day. So, he can't be disabled." What are we supposed to do curl up and die. That is the last thing we want to do. If we curl up it's game over. I get tired of life, but I don't want to die. There is still that little bit of hope I can grab a hold of. If not for me then I can do it for the ones I love.
Posts: 45 | From western kentucky | Registered: Oct 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
My hubby is very supportive and loving, yet he still doesn't really get it. I don't think you can if you don't have it. At first he kept saying, if you have something it will show up in your blood. Now that I have educated him, he understands that part; but he sometimes does that thing like when I say I hurt, then so does he. If I talk about being fatigued, well he gets tired too. The fatigue thing is impossible to describe to someone who has never had complete debilitating fatigue.
I just don't care anymore if anyone gets it or not. I don't have the energy to try and explain it when it gets you nowhere. I just talk to other Lymies and ignore those that don't want to try and understand.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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it would make a great stocking stuffer....or holiday gift... .......
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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echostef
Unregistered
posted
I have the same plans for Under Our Skin.
I am ordering the DVD for my husband and I to watch together, and then I am passing it along to my mother and any of my other relatives that will be willing to watch it.
I have heard stellar reviews about it...Hope it lives up to the hype.
Since just saying I don't feel good isn't convincing enough, maybe this will do the trick.
Hopefully it has the same effect on your dad that I hope it has on my family
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posted
yesterday i went to our family Dr. for my check up..he knowes how bad my hubby is...and asked how he was doing..with that i asked if he would like to see a DVD about lyme..he said of course..so i lent him my copy of Uner Our Skin...he asked if he could make a copy..he would like to show it to some people...now thats what this movie is all about..getting the word out to as many people we can...i'll let you know what he has to say about it...
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I wish I could read all that the others have written.
Just wanted to let you know you are not alone.
I have learned it is better that I am not around my parents at this time. They do make things worse.
But, looking back, they were like this before I had lyme disease.
I talked to my parents on the phone when I lived in another state and the words were a whole different picture from when I was actually around them.
AT the time my mother was so concerned on the phone about my father being dx with lymphoma.
She behaved normally on the phone.
But, when I came to visit I saw the real "normal" that I grew up with.
When my father had lymphoma and was getting his second treatment, my mom ranted and raved about how she had to ask someone for a ride to her dance class because he needed the car to go to his chemo treatment.
She also made fun of him loosing his hair.
And when he was sitting in a chair in the front room talking to me, tell him to get up and go to the bedroom and sit in his chair and watch TV.
She would then sit in that chair for less than 5 min and then get up and go back into the kitchen.
My dad is just as bad in his own way. I nicked named him the "can't do" man.
He would come up with all sorts of reasons why I couldn't do something as simple as asking him to take me to the store to get a battery for my phone to taking me to see my lyme doctor as promissed when I moved here.
I have found it is better for my health to not be in contact with them. But, it took me much longer than I would have liked to catch on.
I kept thinking there must be a way to be around them and manage this.
But, when boundaries are not respected and verbal abuse is the norm and has been for years.
The fact that I have lyme disease is only second.
As far as friends understanding. I have a good friend who has been there for me during this time although she lives in another state.
And she really doesn't get it either. But, I think she would be a good canidate to give the movie to in order to help her understand more.
She doesn't understand why I can't find a doctor who takes my insurance to get help.
There are other things she doesn't understand either.
If the shoe was on the other foot, I don't think I would understand either.
I live with this condition daily and I Have trouble understanding. Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Angelica
Unregistered
posted
Sorry you are going through this and I have been through it myself it feels horrible.
I have no family left except one sibling I don't talk to because they have never been supportive to my ill health and I stopped talking to them before I was even diagnosed.
Maybe your dad is deeply worried and because he hides his feelings from himself they come out in sick inappropriate ways.
You could show him the memorial video made my Open Eye Productions for Leslie and maybe they will start to get it but some people just don't have a clue or how to be supportive. I think in the video Leslie does a wonderful job of expressing what it is like to have this horrible disease and still look fine to the world.
I sadly sometimes feel the only other people who get it are fellow lymies. I am tired of my neighbors 4 year old asking me why I don't work. I am sure he is hearing about the lazy lymie from his relatives because he has not even been around me enough to observe on his own that I don't work. I am tired of people who don't get it and often avoid them.
I am hoping your father will get some insight and come around.
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
I've completely given up trying to get ppl to understand, going out of my way to make them understand, trying to talk to them about Lyme/coinfections/symptoms, etc, and I just don't stress over it, expect anything from them and try not to care/get angry
My family members, extended family, family friends, and every single one of my friends just do not care. Plain and simple. They don't try to understand, they don't want to understand, they don't want to hear about it, they don't want to discuss it, they won't read articles about it.
I mean, noone would watch Under Our Skin. They wouldn't even view the trailer. I mean, you would think if your friend or sister was ill with something and a documentary came out, you would want to see it. I know I would have
They think I'm lazy, I have too much time on my hands, I complain, I have anxiety, I want attention, I over-exaggerate, etc, etc. I had one family member tell me if I lost weight, drank red wine every night, went on the Atkins diet, exercised and got a job I wouldn't have any health problems. I wish!!!
I used to never say no or call to cancel something when it came to family/friends. Now I do it anytime I'm not feeling up for it. They think I'm being lazy and/or don't want to show but let them think what they want
You have to live your life for yourself, not for others. It's just sad when the ppl who are supposed to care and believe in you don't and you can't rely on them
Posts: 1485 | From USA | Registered: Apr 2004
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posted
Nobody seems to care nor to they ask. I got upset a while ago because people here were "GASP" having to travel to Victoria for cancer treatment and its a whole hour drive. I couldnt help myself and mentioned that if I wanted proper treatment I would have to go to Seattle. And you know - nobody said a damned word. Liz
Posts: 234 | From BC Canada | Registered: Aug 2008
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