I have been sick for a very long time(18+ years). I have a temp diagnosis of Lyme, to be confirmed by LLMD 2/13/09.
My family is great and I love them all very much. I have to say though that if one more person tells me to just "think it away" I think I will lose it!
I know I have been complaining for many years now and I am sure its getting old, but I feel like they don't believe me. I feel like I am a burden to them sometimes and to be honest I don't complain nearly as much as I could given the way I feel on a daily basis!
Everyday I get up and take care of a disabled child (21 months old) with MANY medical problems including O2 24/7, significant cognitive delays, endless ear infections, surgeries this list is endless.
I also have 2 other children that are "normal" as eveyone calls them who I have to get ready for school, cook supper, clean do laundry and I work 30 hours per week, all while being ETREMELY ILL.
I guess what I am wondering is, has anyone else had this same lack in support? Could it just be that they don't understand?
To be honest the few of you who have responded to my posts have been more comforting and caring than my own family.
I totally understand, I have a doctor and a pharmacist in my family. They look at all the meds I am taking and think my LLMD doctor is completely insane. Instead of doing the research and supporting me the doctor in my family just excuses everything and says things like maybe I need to see a shrink. Luckily I have been able to sort of bring the pharmacist in the family to my side by showing her the movie ``under our skin''.
The worst part about it is the doctor in my family is in pain medicine and he treats people on a day to day basis who have fibromyalgia, I bet a lot of his patents have Lyme and he and they do not even know it!
My old roommate was a med student who I tried to educate about Lyme but simply would not understand because the big organization like the IDSA and CDC says Lyme does not do this so it must be true.
Lots of people want things to be black or white / yes or no. They want you to have super conclusive blood work. They want to type Lyme in google and see a list of every last thing it does to you and that your symptoms are real without actually having to look around to find the truth. They want to physically see that you are sick in a wheelchair before they can accept you are sick.
For the people that do not understand; I have come to the conclusion if you have never been extremely sick or had a experience that allows you to relate to the hell of Lyme then there is no way to understand it. It is like talking to a foreign language to someone or trying to preach to a brick wall.
I am working on trying to look at it that way and it helps me not to revert to frustration when someone says the standard "you just need to keep strong" or "keep fighting it" we all hear. I am trying to find ways of releasing the pent up frustration in a positive way anytime someone says something like that otherwise it just eats away at me.
I feel your pain! lymenet is a great way to just vent sometimes so keep it up.
Posts: 92 | From Virginia | Registered: Jan 2009
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posted
We have been very fortunate that our family has really rallied around my daughter, who has Lyme et al. However, I can sense that they do not believe someone as ill as my daughter can have "only" Lyme disease. They do not believe a "bug bite" can cause the severe neurological problems she's having.
My only family who believes this damage could be from Lyme is my Uncle, who is a vet. He's seen many animals go chronic, who end up being put to sleep.
They are constantly bringing up other doctors they "researched" for me, telling me I should bring her to them for second opinions... I realize they are trying to help. At the end of the day we all want the same thing- my daughter to get well.
I just suck it up and thank them for their concern, tell them I'll "look into" whatever they suggested... It's rough, knowing that your whole family is doubting the decisions you are making as a parent for your child, but it could be worse.
I hope that your family comes around.. Have they seen "Under Our Skin" ??
Posts: 371 | From CT | Registered: Jun 2008
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bettyg
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posted
deaf, my hubby supports me; my 3 sibling brothers refuse to deal with this. they told my sister, "it's all in your head"!
best wishes; yes, we are the most supportive folks you will ind!
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In my own case I can deal better with the physical and other symptoms that I have (and there's a list) than the social and family issues.
I have very few family members at all, and after trying to make contact (and even amends, needed or not) with my two closest relatives -- my brother and my cousin that I grew up with --- I never received any reply.
My aunt ironically only TODAY finally accepted that my illness is real, devastating, and will not be an easy road.
It is especially hard since I was the caretaker for many of my family members.
I had always assumed someone would be there for me when I needed it.
HOWEVER, as another Wise Woman of the board told me, I had to learn to let it go.
I am too sick and too tired to fight about it, argue about it, or beat people over the head with sticks over it.
Just the idea that I am actually saying that is a long way for me.
I had to learn that what I needed was encouragement (my spirit was nearly broken).
And that encouragement is here.
These are people who understand it.
I also learned I had to somehow encourage myself (no simple thing --- I'm a caretaker, remember).
And now I try to use the frustration to make people aware, and work for change.
-------------------- The Bite: July 1995 Next 13 years: Treated for things I didn't have Symptom total: 45 1 faint Lyme IgM May 2000 5 More negative tests IGeneX says YES! 3/16/09 Finally feel human: 2012 Posts: 120 | From Plainsboro NJ | Registered: Feb 2007
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Just a quick word. I know its rough and i know what its like to have lack of support. I also know what its like to have a few selective, compassionate friends. Try to focus on that if you can.
I waste zero energy on these things we cannot control as there is limited energy to go around so i give 100% to me and my recovery. You can always find a friend on here. As i like to say the only difference between family members and your nose is that you can pick your nose.
I have more bad jokes if you need a pick me up.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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