One of the things that relieved me the most when I was diagnosed with Lyme disease was that I had a reason for being too tired to go anywhere and do things. I could tell that some friends and family thought I was self absorbed and lazy at times, when in reality I was too damned tired and sick to do much of anything - anyone else have the same experience?
gwen
Posted by kelmo (Member # 8797) on :
My daughter would go to school and try to make it through a 90 minute class in a hard chair without falling asleep, or passing out from the pain of the migraine.
The teacher would say in front of the class, "When I don't feel good, I have to come to work. Wish I could take off as many days as you".
Or, if she came in after a bad two days, the teacher would say, "So, you decided to come".
The next day after trying to go to school, she would be out for three days. It was just too hard, and I couldn't stand watching her be in so much pain.
This is a heartbreaking disease.
Kelly
Posted by klutzo (Member # 5701) on :
Gwen,
My mother dragged herself to work in a wheelchair due to polio, and brought me up to believe that people who don't produce at least as much as they consume should be killed for the benefit of society.
So, when I got Lyme, I worked until I collapsed in my office and had to be carried out and put in the hospital, unable to walk without assistance. I tried to go back to work twice, but the same thing happened on the morning of the third day back every time, so I had to give up.
After I went on disability, my FIL said I was a "useless human being who is just nuts, not sick, and ought to be dead". He told other people this all the time, including my own friends. He disinherited my husband because I could not give him grandchildren. He died recently, and I admit to being glad.
So, I completely understand how much this kind of disbelief and lack of support must hurt you. I never got over it. I hope you can get past it and learn to ignore it. If you do, please let me know how you did it!
Klutzo
Posted by klutzo (Member # 5701) on :
Kelly, I think that teacher should be reported to the Principal, or whomever is in charge of such things. That is abusive and totally uncalled for. I can't believe we pay property taxes for this! Klutzo
Posted by gwenb (Member # 7217) on :
That is terrible about your daughter Kelmo, and also about your father-in-law Klutzo, sometimes I wonder what is wrong with people.
I had an upsetting event yesterday after I found out that someone didn't want to work with me because I didn't "get it" about a strategic decision at work. There are other issues regarding this person but it wounded me to the quick that my cognitive impairment, which I believe is mild most of the time, may have impacted me at work. Also because I want to appear competent I can't say, "The reason why I am slow on the uptake sometimes is because Lyme disease affects my ability to mentally function."
I've a rough couple of days lately, normally I can shrug stuff off but this week I just feel down about this disease and the fact that I was undiagnosed for 16 years.
Gwen
Posted by *Daisy* (Member # 9593) on :
Gwen,
I feel this way exactly!! It is such a relief to me now to know that there is something wrong with me and THAT is why I am too tired to do things.
In addition to other people thinking that I was lazy and selfish, I used to think it too, and hated myself for it. I have felt guilty for sooooo long because I felt like I just didn't try hard enough.
It is nice to let myself rest without feeling like I am a no-good slob. I'm not lazy, I am chronically ill!!
Posted by minimonkey (Member # 8693) on :
I have folks insinuate (or outright say) this on a regular basis -- this actually stumps me, as I have always been (and continue to be) a highly productive overachiever. Even during the worst of my illness, I continued to work (though had to use a cane to walk for a while and suffered daily migraines -- I even went to work with lyme meningitis a few times!) and keep up with the housework, etc. But, having been a superwoman for so long, even slowing down to a more-normal pace has drawn criticism.
I've worked hard to try to accept that I am ill (after years of trying to convince myself it was all in my head, since the ducks couldn't find anything wrong) and that it is imperative that I give myself a break.... some days I do okay with this, some days I still beat myself up for it.
It just breaks my heart when I read posts like the above about teachers and relatives who are so incredibly cruel!
Posted by treepatrol (Member # 4117) on :
Hers one I get :
You gotta stop taking antibiotics there gona kill ya.
Duh I guess lyme cant do that Posted by liz28 (Member # 4946) on :
Yeah, but that's the price of being a goddess. Now, where's my ostrich feather fan? It's getting hot in here.
Posted by Aniek (Member # 5374) on :
I've had to come to terms with this for myself, not others.
I'm the overachiever type too. My response to getting diagnosed with fibromyalgia was applying to law school...and attending at night while still working full time. My Lyme diagnosis came within hours of sending in my application.
I've been hard on myself lately, because I need to sleep 9-10 hours a night minimum. Luckily it's summer so no classes.
Most people at work know I'm sick, because it's the only way to keep my workload down. I was getting so much done for so long, even sick, that nobody seems to notice I'm not productive any more. Except me, and it drives me crazy.
Posted by LostCityAgent (Member # 9050) on :
YES!
The DIOCESE JUST THREATENED TO THROW ME OUT, they do not believe that I AM SICK! EVEN WITH THE BRAIN LESIONS!
Posted by char (Member # 8315) on :
I think that they think we are lazy.
I do not have the energy to convince people that we are truly fatigued, so we are changing our life and relationships to lessen exposure to the negativity.
Our biggest challenges have been the schools for kids. I can't imagine how stressful it must be to be given a hard time at work. (or seminary)!
Char
Posted by lymednva (Member # 9098) on :
My ex told me I was faking it to get back at him for traveling so much. My illness, undx'd at the time, played a large part in our divorce, although I am definitely better off without him.
Recently he told me that I was narcissistic. This is the guy who told me he didn't come to the reception following my mom's memorial service because he didn't want everyone to run up to him and ask him about his latest project, talking the focus off me. At least two of our adult kids were not impressed with that answer.
Posted by Beverly (Member # 1271) on :
Yes, but I also need to come to terms with this for myself.
I am starting to not care what others think anymore. This disease stinks, that is for sure.
Posted by Health (Member # 6034) on :
Anone that says this to you,
REMEMBER this.
There is something wrong with them.
I had this happen to me a few times, twice when I had to quit the BEST job I ever had 6 years ago. I was so ill from the building, something in it, on the walls, who knows, it was a great building. I near died from this job, I was so bloody ill, I was a PILLAR of strength before I got ill.
I was so devasted from this loss it was the biggest blow to me so far, and had TWO family members say cruel heartless things to me back then,
BOTH member are no longer in my lives, one is a sister, and the other an Aunt. They had said a fwe other things over the years, as I continued to get worse.
I was a runner, a mountainbiker, educated, and much more.
I will never tolerate these people again.
Trish
Posted by Lymelighter (Member # 5310) on :
Yes, my manservent, Donald and Doc Dave Feel that way about me...
Posted by csperanza (Member # 9613) on :
What do you think the response would be if you told someone that you had "a systemic bacterial infection that is resistant to treatment," that "my immune system is compromised" and that "extreme fatigue is par for the course as my body fights off the infection and adjusts to the medications"? if someone pressed you for the name of your condition, you could tell them "borreliosis." If they ask any more questions, tell them you'd "rather talk about something else, something more pleasant. Like what's going on in YOUR life?"
Do you think that if people didn't hear it called "Lyme disease" they'd be more sympathetic about it?
Just wondering.
Posted by humanbeing (Member # 8572) on :
People who truely love you, trust that you are telling the truth about your illness. They will take the time to learn about lyme and TBI's and they will be open to hearing about the political environment around this dangerous infection.
The people who didn't really care about me and got bored have left my life (thankfully). The people who really love me are learning about this along with me.
Don't fret, they were more interested in their own stuff than you. Embrace this new phase of life where relationships wmay not be as plentiful but will be deeper and more meaninful.
Posted by JeffM (Member # 8919) on :
Do people think I am lazy, self absorbed and selfish?
YES.
Some do. One neurologist accused my daughter of faking for attention. We also wondered if this could be true at first, when symptoms just started appearing.
But back to the people that think I am lazy, self absorbed and selfish . . .
F**k them. I am sorry for them that they are so mean and shallow.
We all have enough to worry about without worrying about how others are judging us.
Thank god for this website, where the shared insanity of this disease makes us sane!
Posted by chroniccosmic (Member # 7789) on :
Some folks do think I'm lazy and lucky that I don't have to go to work. Weird. I would give anything to get up feeling great and head off to work like the rest of the world. Not to mention the income.
Anyway, I cried when my LLMD on my first visit, made a point to give me a pep talk saying that I'm not lazy or crazy just sick. It was one of the nicest things I could hear.
Lost many friends and relatives over this disease. But am learning to stick up for myself sooo much better.
Kelly-We just went through this with my daughter in high school with several teachers. I kept on them constantly as this was one thing I couldn't tolerate for her. Luckily, friends will usually validate what is said in class because they tended to side with the teachers. Posted by lingolady (Member # 8042) on :
I find that the worst people for me have been family members. I am depressed with my condition, yes. But I have a know-it-all sister and a know-it-all daughter who say that I am being negative and that is making me sick. My answer is to limit the contact.
My greatest support is at work, ironically. I can't wait to get back to my school. I know I'll be busy, tired and stressed at times but the positive support and feelings of worth are worth it.
As for that teacher, Kelmo, don't put up with that treatment of your daughter. Talk to the teacher about it, and talk to the principal if that doesn't work. Do not tolerate that treatment. That's not only hurtful. It's unprofessional.
Posted by lingolady (Member # 8042) on :
I find that the worst people for me have been family members. I am depressed with my condition, yes. But I have a know-it-all sister and a know-it-all daughter who say that I am being negative and that is making me sick. My answer is to limit the contact.
My greatest support is at work, ironically. I can't wait to get back to my school. I know I'll be busy, tired and stressed at times but the positive support and feelings of worth are worth it.
As for that teacher, Kelmo, don't put up with that treatment of your daughter. Talk to the teacher about it, and talk to the principal if that doesn't work. Do not tolerate that treatment. That's not only hurtful. It's unprofessional.
Posted by Mo (Member # 2863) on :
That teacher broke medical privacy laws.
If your child has an IEP or a 504 plan, they broke confidentiality laws - they are mandated to know what the document says, and can be held personally liable for not following it, or for making the child feel at fault. If you do not have an IEP, I suggest you get one.
Regardless - nail them with a direct, short reference to the law and your child's rights, and notify them that this is damaging to her.
Under federal disability law, the teacher's role is to educate your child - and to educate them based on how an illness impacts their learning. Their role is NEVER to pass judgement on a child's health condition. Not to mention the beratement of an ill student in front of her peers. - by doing that, the teacher is IMPEDING learning - potentially contributing to school-phobia if a child has chronic illness.
Send it certified to the teacher, and cc the Principal and Superintendant, even the board.
Even if you have no IEP or 504 yet - under the law, if your child is suffering from an illness that impacts her daily living, she is protected by 504.
Just be sure you have a doctor who can attest to her condition, in case the school gets defensive.
Some techers will do that, and they need to be strongly reprimanded or they won't stop. Unbelievable.
Mo
Posted by Mo (Member # 2863) on :
"do people think you are lazy, self absorbed and selfish?"
Yes. Now quit asking questions and rub my feet.
Mo
Posted by i want help (Member # 9786) on :
they must think I am something!!!!
as none of my friends call me anymore!
Lost so called friends/coworkers several years ago when I returned to work still very ill to help them out but I really should not have
sister actually threatened that if I did not go to her child's bday party that I could never see them again
she did not care how sick "i thought I was"
parents agree that I should have wished him a happy bday so that I am guilty in this case
I told them I am not mentally as sharp as I normally have been-busy in and out of docs and emergency rooms
(am undiagnosed but was my case was accepted at a local LLMD)
well I love her children and there has never been an aunt who could do more. they vacation with my husband and I every year on Cape COd. I bend over backwards for them and have ever since the moment they were born!
Aren't people the strangest??????
another friend who had MS and anxiety so who knows just how I feel moved to a rich town and essentially never call again - I guess because I do not have a country estate than maybe she would help out with my illness.
![[loco]](graemlins/loco.gif)
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Except me, and it drives me crazy.
![[Big Grin]](biggrin.gif)
![[Mad]](mad.gif)
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Mo
![[confused]](graemlins/confused.gif)
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and there has never been an aunt who could do more. they vacation with my husband and I every year on Cape COd. I bend over backwards for them and have ever since the moment they were born! ![[group hug]](graemlins/grouphug.gif)