Has anyone got ideas on how to help your family understand your illness? It seems like everyday there is something new wrong with me and my family fails to understand this is the way lyme disease is. I really need help here.
sick
Posted by Tincup (Member # 5829) on :
Take them back with you while you are in your doctors appointment.
For some reason that usually does it.
And/or...
Contact the docs office in advance and tell them you are bringing in some relatives who are having difficulty getting a grasp on the situation.
Usually they can lend a helping hand.
Hope that works.
Posted by sick (Member # 9143) on :
Tincup
They have gone with me to ever appt.
sick
Posted by bettyg (Member # 6147) on :
dorothy, thye are in DENIAL and don't want to accept this since they HAVE gone to your llmd appts.
i ws going to suggest my medical post at top, LYME VIDEOS, but they are living with you...
Posted by Lymetoo (Member # 743) on :
Sometimes they just don't 'get it.'
How is your sleeping now? Any better??
Posted by mtree (Member # 14305) on :
I had been in remission for a long tme....and now battling again........
family and friends chose not to understand....back then........
...and now this time...same thing
.....it has really kicked my butt this time agian.....I just don't have it in me to explain to people..... my husband was so tired of people asking him how I was....and him having to say...she's doing ok......when I wasn't.....
that...he finaly wrote a letter .....about what we as a family are going through......explained to them......what Lyme is......gave them some articules and some threads from here to read....
explained what my days are like.....we are seeing the right doctors .... told them that all we needed from them was support and UNDERSTANDING.............. he sent that to his family and mine and a few close friends..(about 15 people)....he had no expectations of what anyones responce would be...... he just wanted to get it all out.....after all this was his family....who else do you go to.. when life is just so difficult and you need help....complete strangers on a computer ?
some responces were funny .....sending my husband information about my Lyme's disease....Lyme's... .. they meant well..... most responded supportive........and a few never responded......
but all in all....glad he sent it.....he was so tired of saying everything was good...or ok....or she's hanging in there........ I was deeply touched that he did this....
we need our spouses to help advocate what we are going through...if they say we are ok...then people think we are......they have to stand up for us.... especialy when we can't.....
but also...if you don't have a spouse...the energy to try to get family and friends to understand it is sometimes a looseing battle.....if they aren't getting it....they are choosing not to.........
mtree
Posted by randibear (Member # 11290) on :
unfortunately, nobody in my family doesn't "get" it and the never will, and that includes my husband....
Posted by Geneal (Member # 10375) on :
Unfortunately you can't make someone understand Lyme.
They have to want to.
I will admit that it is a complex subject with so many variables
That most times it seems impossible to have so many issues related to one disease.
We know better.
Try to save your energy for healing.
I've been in treatment for over 19 months and some family members (sister RN)
Still call it Lymes even though I have told her there is no "s" several times.
It is the old addage of you can lead a horse to water, but can't make them drink.
God willing none of our family members will ever have to experience what we do.
Hugs,
Geneal
Posted by listenswithcare (Member # 10719) on :
Yea - I saw the post on Robynn's Lyme List today for the Under Our Skin film. I have seen parts of this, but I watched the trailer again.
It made me want to send the article to my family (sister and Mom), but then I realized that they really are not that interested. My Mom used to send me some stuff she saw about Lyme, but I almost always already knew about what she was sending. Then I would send stuff to her because I thought she was interested and when her email response was something like "I will look at this, Robin", I knew that I was giving her information that she did not want to have.
My sister is a nurse. Do you think she has helped me at all? Through all the years that I was at home alone and in pain and struggling just to stay working? No! All she did at one point was to tell me the infectious doctor to see - oh, and that doc. didn't even want to touch me! Sent me off to her "Lyme expert" rheumy and he said it was all in my head!
It is very difficult for people to understand Lyme when they don't have it. Many of us "look" just fine. I used to get that in the office - "but, you look good??" - yea and they don't know that I spent 1/2 hour on the floor crying that morning as I did my stretching so I could get rid of some of the pain before I took my pain killers and went off to work. Or that I had to lie down several times that morning while getting ready for work just to have energy to do the next thing (wash face, brush teeth). Or that I had to take a handful of pills first thing in the morning to help me get going (thyroid and adrenal support).
Or that I take over 40 pills each day!
Okay - sorry - I got a bit off track, but I guess I needed to say all of that.
We can't make people understand. And it is hard, because I want my family to understand. See if you can find other close friends (or just ONE friend) that can hear you and understand. It will help alot.
Robin
Posted by adamm (Member # 11910) on :
My mom's been in denial for a full year now--are
there any LL grief counselors out there?
Posted by disturbedme (Member # 12346) on :
I think I got luckier than some people here as my husband's family and even MY family are very caring about it all. I'm not sure how much they understand the actual disease, but at least they seem to care and want to help and want to understand. Except my mother-in-law calls it Lymes.
My husband is also very caring and understanding, but there comes times when he tells me, "Oh, you can go back to work. I think it would be good for you, etc., etc." When I know deep down that's not going to be good for me right now (even my LLMD and my lyme-friendly doctor think it would be best if I stayed home and/or worked from home). Sadly, we're in a position right now with finances that I might have to go back into work. Not something I want to do at all. Something I'm terrified of doing because I'm afraid of what it might cause: a set back, I won't be resting and healing like I need to be, I won't be getting as much rest as I seem to always need as I take many naps usually, etc.
I have had problems with my friends. They just don't want to hear about what I'm going through. One of my friends, whenever he'd ask how I was doing, I'd tell him and after a while of my answers always being, "Not too good", "I feel like crap today", etc., I guess he got tired of it because I started getting from him in reply, "Yeah, yeah, yeah" or "Why do you care only about yourself?" That last one threw me for a loop. I had no idea where that came from. I guess since I always told him how I was tired of feeling so miserable he got the idea I didn't care about others?
After a while, he just never asked me how I was doing anymore. And I didn't talk to him about how I was doing or feeling. But it made me really feel less of a friend towards him. It was just sad that it came to that all because he was sick of hearing me always tell him how bad I was feeling. Well, sorry, can't help it.
Him and I don't really talk much anymore... And it's sad because he was my best friend during high school (I'm 24 now).
I guess it's when you get really sick that you find out who your real friends are. They'll stay by your side no matter how you're feeling.
Posted by sick (Member # 9143) on :
disturbedme
For over 25 years now I have occasionally looked at my side and found a big empty spot where my friends use to be.
Now one of them is sick---she could very easily have lyme disease. I called her three weeks ago just to ask how she was. I left a message though I haven't heard from her in over a year (not even when both of my parents died within three weeks of each other.) Did she return my call. No.
sick
Posted by Peacesoul (Member # 13709) on :
quote:Originally posted by disturbedme: My husband is also very caring and understanding, but there comes times when he tells me, "Oh, you can go back to work. I think it would be good for you, etc., etc." When I know deep down that's not going to be good for me right now (even my LLMD and my lyme-friendly doctor think it would be best if I stayed home and/or worked from home). Sadly, we're in a position right now with finances that I might have to go back into work. Not something I want to do at all. Something I'm terrified of doing because I'm afraid of what it might cause: a set back, I won't be resting and healing like I need to be, I won't be getting as much rest as I seem to always need as I take many naps usually, etc.
My family also told me it was best for me to go back to work. My dr's on the other hand thought I need more time at home. I was off for 4 months and went back 2 months ago part time and now I'm full time. It's helped me to be out of the house and off the PC and couch because I focused too much on me and feeling sorry for myself.
I have some tough days where I need to sleep or feel really sick but on those days, I either stay home or leave work early.
It's not been easy, but for my mental state, I need to function "normally"
I'm also lucky in that my family and friends understand. They don't understand lyme or how it makes me feel, but they know I'm not well and they love me so they try really hard to get it.
I guess some people just fear the unknown so they put it away hoping it goes away. Try not to take it personal. I know it's hard, but if they love you, then it's about them and not you.
Posted by GenaD (Member # 11988) on :
So nice to see this post...
I recently got divorced and moved back home to NY from Florida. My husband wasn't regularly paying alimony, I can't work, and it made more sense to me to move in with family. I'm living with my aunt and uncle and cousin.
My aunt and cousin do their best to understand, but my uncle has been asking me constantly if I found a job yet. He also asks my aunt and cousin this all the time. He KNOWS the whole point of me coming back home was to try to heal and THEN get a job when I was better.
When my family tells my uncle that I am too sick to work he makes snide and sarcastic comments. This hurts me and angers me!
I know I need to confront him on this, but I just don't have the energy. He has even done the typical, "But you look good! You don't look like you feel sick at all!" Well, I learned if you say how you really feel, people don't really want to hear it. So, not wanting to be a "downer," I have learned to talk very little about how I feel. I can't win, though. Because I'm not complaining and I'm trying my best to do everything I can, some people think I must not really be sick!
People's attitudes can be the insult added to the injury. I know myself and my limitations and there's no way I can work right now, but my uncle makes me feel like I'm lazy or freeloading when he makes his snide comments about me not working. I can't even THINK about getting a job right now!
Every day I have to fight to not sink into a deep depression every time I face the fact that I may not ever improve enough to work again. What will I do then? My uncle can be hurtful, but doesn't he realize that my life has been turned upside down and I'd LOVE to be able to work and be independent again??
I can't understand people's lack of compassion sometimes. Sometimes they aren't even thinking logically. Like we WANT to be in the position we're in! I guess it just makes us even stronger to have to deal with people's attitudes on top of everything else!
Posted by Clarissa (Member # 4715) on :
As soon as the DVD for "Under My Skin" documentary comes out, give one to ever person in your family who doesn't get it.
You won't ever have to say another word. Goto medical for feedback of the debut of the film at the Tribeca Film Festival.
That will be my Christmas gift to everyone.
Just be patient...it will be worth the validation!!
Lyme disease documentary trailer. A VERY good trailer!!! Can't wait for it to come out on DVD!
Posted by bettyg (Member # 6147) on :
dorothy, since under the skin was mentioned, go to my post at top of medical of all lyme videos compiled; many to chose from you can send folks or to sit down and watch them together! Posted by Munch (Member # 11323) on :
I like the Spoon Theory method of explaining chronic illness. People get it right away.
Then you can say "Sorry, I'm out of spoons for today!"
I am soooooo tired of hearing "you probably have that flu thats going around" or "maybe it's allergies" or the 1000 other things my family and friends say. not saying Im not perfectly capable of contracting the flu and yes I have sinus and allergy issues but come on!!!! gimme a break! I have Lyme disease! I know not all of my maladies are directly due to Lyme but friends and family seem to have the same "no such thing as chronic Lyme" mentality as most doctors do! It's as if you have to explain to the daily that yes I do infact STILL have Lyme disease today, hasnt changed from yesterday and if I just generally dont feel well or am very tired, there is a VERY good chance it is my Lyme causing the problem and getting out of the house becasue "some fresh air will do you good" is not always the best idea! rawwwwwwwwwrrrrr....lol! glad to know I'm not the only one that faces this problem!
Posted by GenaD (Member # 11988) on :
Lyme-pie you definitely aren't the only one facing this insanity!
I mainly get the "but you look so good" (as if that changes the diagnosis) and I also get asked by some people if I'm better yet--even though I have explained to people over and over that Lyme isn't like a cold that runs its course.
Though I guess its nice that certain people even ask if I'm better. My own mother never asks me how I'm doing at all!
Posted by Lymie-Pie (Member # 13900) on :
Thanks Gena, it always makes you feel better to know you're not alone!
Munch, the spoon theory rocks! thanks for sharing that!
Im feeling spoonless.....lol
Posted by njlymemom (Member # 15088) on :
i actually prefer no one asking how i am doing...b/c if they were really concerned and wanted to know they would call me .... especially when months go by and i haven't been seen
i only have very few people that i can talk to and i try not to "over burden" them with what our family is going through
when my youngest missed 1/2 the school year...and we hadn't been seen at the bus stop for many weeks...not one neighbor called to see if we were ok....many i thought were friends who we had known for a few years
hearing "but you look so good" makes my skin crawl!
we just got back from vacation...i always push myself to make sure we all have fun and that the kids stay well....and as always i collapse when i get back...i could not get out of bed this morning and was hallucinating....very scary...this i can talk to no one about...how would they understand...you know that they wouldn't
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mtree
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