posted
Is it just me or what? My family is driving me crazy! They think I am just so depressed just because I'm sick.
It's very hard to walk around with a big grin when I am in pain and feel like I have the flu 24/7!
This criticism is very hard. I am doing everything I know to do. I try to be perky and chipper when I feel slightly better.
But most of the time I feel horrible! I want to keep my sanity here but people constantly on me is making things worse!
Is there any way possible to get them to understand!
Posts: 415 | From USA | Registered: Jun 2012
| IP: Logged |
MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
Messa, just want to let you know WE understand completely!!!
Wish we had the answers.... we are dealing with it too.
Posts: 2251 | From USA | Registered: Aug 2011
| IP: Logged |
Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
You can offer the movie "under our skin", pamphlets, take them to the dr with you - but if they don't want to believe they won't. Depression does, to some degree, go along with chronic illness. Lyme and Co doesn't spring people in to joy, you have to learn simple things that can lessen the downer feelings when they hit.
My son didn't always agree with the Lyme diagnosis, but he was super in helping me. My husband just can't handle that I have limitations. I tried to not talk about all my ailments with those who didn't want to hear. Bless my sister, her ear must be loose after hours of listening.
You can lead them to water....
Know in your own mind about Lyme and it's effects Educate those who want to hear Be grateful for those who listen and help Smile at those who don't understand and say things that are off base- use your energy other places. A few just hate to see you feel so bad.
Forget perky and chipper actress time, just put on a little lipstick and you will feel and look fabulous. Not really, but it will make them think....
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
| IP: Logged |
Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
It's because we're still standing on two feet. (many of us are anyway)
How can we be sick if we're walking around?
Posts: 1297 | From USA | Registered: Dec 2002
| IP: Logged |
posted
It just gets old trying to convince and ask people to help. I'm just worn. I know all of you understand.
Seems all I do is research. People think we are obsessed.
Thanks you guys. Nobody knows me better than you.....even though we've never met.
Posts: 415 | From USA | Registered: Jun 2012
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- To those who do not understand the degree of research and learning we must undertake due to lack of true lyme & TBD education in the medical colleges (and beyond, other than with ILADS). . .
If one lands in hell, one will likely study all possible exits. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
I try to give them some info, so they can start to get a picture of what we're dealing with.
Like, "Did you know the bacteria get into the brain within 12-24 hours of exposure and start to inflame all the nerves - this messes up the brain anywhere as well as nerves anywhere.
The bacteria can also corkscrew into tissues anywhere and start inflammation that way too.
Because of what the bacteria can do, I am dealing with (and then tell them your symptoms, if they don't already know).
Then, "This is all very challenging to deal with, and I am doing the best I can. What else would you like to know?"
May I say, that sometimes their next response comes as a surprise to me, but I keep a straight face and answer, then ask, any more questions?
Those who are interested will engage, and they can get more understanding. Those who will not engage are just not interested.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Those are some very good pointers robin! Thank you so much. I am going to try (with a straight face) to explain the corkscrew inflammation thing and see what kind of response I get Posts: 415 | From USA | Registered: Jun 2012
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i dont know why they are like that but they are. it is not YOU. i happens to most of us i think.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
posted
Thanks Ipkayak. Things have been pretty tense around my house. My four year old is even saying things. Oh Lord give me your strength!
Posts: 415 | From USA | Registered: Jun 2012
| IP: Logged |
posted
Maybe folks with children here could give you some pointers on how to deal with a young child - 'cause I know they need their parents to be there for them -
Yeah, you can tell the adult members of your family that it's basically a nonstop inflammatory process going on.
Would they be up for a game? Challenge them to research what Lyme disease does and present five facts to you about its action inside the body. Give them a little prize for doing so!
Then do it again, until you have quite a little list of facts of what's going on. It's a complicated illness.
That will also keep you on your toes to be researching along with them to make sure they get their facts right!
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Excellent idea robin! Thank you.
Posts: 415 | From USA | Registered: Jun 2012
| IP: Logged |
Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Isn't it amazing that we can be dealing with symptoms most people have never experienced and don't have a clue what it feels like? This is our everyday reality and others don't have a clue?
Plus our society teaches us that we have to be in control of our lives - always in charge. Anything else simply means that we are not being responsible for our lives.
With that kind of orientation, plus psychologists still claiming that peole who complain about how bad they feel "just want attention", how could the average person act any differently?
Makes it really easy to blame us.
Posts: 1358 | From Midwest | Registered: Apr 2009
| IP: Logged |
posted
Yep, I think you named it, the inability to feel what we're going through, running up against basic cultural operational life standards - this runs contrary to standard expectations - and judgmentalism. I'd also add the invisibility of this for a lot of us (but not all of us).
It's a hard fall, when this happens. I didn't want to admit to anyone that it was happening, in the beginning.
And as a result of this, my experience is different now than the basic public's way of doing things. Like I see people run for buses and subway trains that are about to pull away. I see people run up and down moving escalators.
And me, I stay in place, I get there when I get there, and I don't rush, nor can I. It's a more relaxed way of getting around.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Yep. I didn't want to admit to anyone or myself what was happening either. It was unbelievable. A nightmare. So I pretended to be okay until I could no longer hide it.
And I had the diagnosis of CFS for so long, which no one took seriously. Now with Lyme, some think I have just come with another diagnosis. Those people dismissed me a long time ago.
At least I'm improving some. That gives me hope.
(I haven't been on here in a while. I know this thread is old.)
Posts: 1358 | From Midwest | Registered: Apr 2009
| IP: Logged |
posted
Such a good thread. I agree with everything said. When I was fighting in silence, everything was ok.
When I finally gave in to it and told people how horrible I feel every day-many went the other way.
They just can't stand seeing me like this. It is so sad. My husband has been great but lately just can't get out of the house fast enough.
Makes me so sad
Posts: 238 | From new england | Registered: Feb 2013
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
you know anymore i don't care a tinker's damn what people think.
i thought i had "friends". little did i know. when i got sick or said something, they went south. even my family...
now i say nothing and don't associate with "loosers"....yep, "loosers". they have lost the opportunity to gain knowledge and they lost my friendship.
we have to let these people go.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
I agree randibear and others.
This illness tells us the truth about people. I've come to the conclussion that there is a "bully" that dwells in many people, and when you are sick you become an easy target for that.
And so sad. Just think of the opportunity that people have to learn compassion from this.
And really, people for the most part are more interested in what they can get from you than give to you.
And when we feel bad and our energy is low, we are not very exciting.
But they are being selfish.
Yes, we have to let them go.
I am very down right now because of an unpleasant encounter with my significant other who has been so good to me overall.
But today, he just flew off the handle and said something very insensitive about my "brainfog". So I'm hurting.
posted
I was just thinking today as I was walking my puppy that my symptoms are not visible. Everyone tells me I look great. I can walk and move fine because MY symptoms are mostly neurological-pain,exhaustion and brain fog.
When people ask me how I am I usually just say I am having a good/bad day. Thankfully-I have some good days now unlike when I was treating for 3 plus years when I felt like I was dying everyday!!
When I tell my husband that I don't always think "straight" or that I absolutely cannot go back to work as a teacher he gets annoyed! He lives in denial of the impact this disease has had on my life and how much I can do each day.
I have accepted that my friends and family cannot possbly understand what it is like to have Lyme and it's co-infections. That is why I "enjoy" Lymenet because you all GET it.
In spite of all this I still try to live my life to its fullest. When I think back to how sick I was for so many years and how much treatment I have endured,I realize that I DO feel much better but I don't think I will ever feel as good as non-Lyme people.
I think that most of my friends think that I am "cured". They think- How could I not be cured on 4 years of antibiotics???
If I dwell on it too much it makes me angry so I force myself to do as much as I can every day and try not to complain...I accept that I cannot do as much as most people and I try to pace myself.
I must say that sometimes I wish more people I come in contact with would get Lyme so they would "get it'but then again I always say that I wouldn't wish this on my worst enemy-and certainly not my family and friends.
Posts: 256 | From long island, new york | Registered: Feb 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic