people know how sick I am and just do NOT Care!!!!
No phone calls from friends and super quick ones from SOME family members
everyone is so SELF INVOLVED it is shocking
at least my work sent me a nice basket which I am really grateful for!!
just wondering if any of you are as surprised as I am about how people respond--especially so called friends (even ones I have had for a long time!!!)
Thanks! just had to say it! KRistin
I do not know how to continue on with these relationships once I am feeling better. It is hard to ignore. But then I will be left with no one if I decide to end the relationships!!
I would love to tell them how hurtful they are being but I have not--I guess if they do not know enough already it may fall on deaf ears
Anyone have any tips?
Posted by sarahinnewyork (Member # 7179) on :
hello-
I think that some people that care for you deeply are probably in denial that you are ill!
My husband was shocked at how little support I got from my mother, but I realized that she just couldn't face it-
Unfortunately, there are alot of people that think that this is easy to cure- as they have had a rash and gotten adequate treatment early enough-
One friend of mine said, "everyone in my office has had lyme disease and is fine"
Well- it's just misinformation- I try to educate people as I go- and explain that if it can be treated before it crosses the blood brain barrier that it is much easier to treat-
we are a society that doesn't know how to deal with, "sickness" your friends don't mean any harm- they most likely just don't know what to say or do...
hang in there- Best health Sarah
Posted by cynd (Member # 8738) on :
I am saddened to read how your friends/relatives have been treating you. I think a great majority of lyme patients probably have had the same thing happen.
Unfortunately, unless you are living with lyme, you just don't get it. Until the general population becomes more aware of and knowledgeable about lyme, things won't change. People in general just don't get it.
We really are a society of "quick fixes". Surgeries or pop pills and you are better. How horrible lyme patients feel isn't noticeable to the average person. Not as if you have a cast on your arm or leg. Then that is quickly noticed.
You are not alone in this. The person who has ignored this illness the most is my sister ... and I thought we were so close. In two years, has only asked 3 times how my daughter is feeling ... and 2 of those times, interrupted my response with an off-subject about herself. This is what I mean. They just don't get it and sadly enough alot of people today just live in their own little worlds, totally self-absorbed.
I am sure there is a friend or two who will surface through your ordeal and will be there for you.
Just hang in there and take good care of yourself. I always tell my daughter, she will come out of this a more compassionate, caring human being. I'm sure you will also ...
Posted by firepipersnurse (Member # 9637) on :
hi kristen, how did your tests turn out? have you gotten any results lately. i know we've been pm'ing but haven't heard an update to your eeg and if you've seen a doctor or neurologist to rule out other causes.
let me know.
i think the diagnostic process is very long and i think alot of us feel that people kind of put us on the backburner but i think that if we look at it from our perspective, aka, if it wasn't us, we'd be the same way. we think of people, perhaps prays for them but have so much going on in our lives that unless we know for sure someone is suffering from some kind of disease process we just sit and wait for a diagnosis before we actually come forth with support.
big hugs, i know how you feel karen
Posted by radiogirl (Member # 9202) on :
Hi , For me with long standing illness,people sort of got used to hearing the different diagnosis Ive had like CFS,FM etc that I decided when borellia was possibly the cause I didnt say anything.
This naturally isnt right for everyone I just decided not to deal with anybody elses reation.It has saved me alot of hassles.But when your in the throws of illness and do need support maybe tell the ones who deserve YOUR support because I have a feeling you would be there for them.Sometimes an old fashioned heart to heart to heart with a friend or close relative is good for everybody.
Take Care,RG
Posted by SForsgren (Member # 7686) on :
I am hoping that the movie Under Our Skin helps with this. Please support it. www.LymeDiseaseFilm.com Posted by bugabooboo (Member # 7383) on :
I Want Help, you're not alone. This entire illness has been a surprise to me.
From working in a healthcare clinic of 50+ Dr.s and not a one who understood this illness to a family who continues to doubt that I'm ill with something "legitimate".
Just 4 months ago, a family member literally spit on and accused me of being "psycho" and having to be the center of attention. This after traveling all day, then sitting under intense fluorescent lights for 3 hours. I had an intense headache, dizziness, could hardly think, body pain...you know.
Several of my family and friends continue to ask the same questions over and over about why I don't get testing, then raise their eyebrows like they know better. I try to explain.
I rejoice that my husband understands and supports me, takes me to dr.'s visits, pays all the bills (unable to work for 2 years), asks me every morning, "what kind of a day is it?" and plans his day accordingly.
I ask myself have I ever been this thoughtless and selfish toward anyone? Of course. We all have. We fill our days up with our own agendas.
But bitterness is counteractive to healing, so I remind myself to forgive.
I have however found that I have to protect myself from too much time with "toxic" people.
Just like die-off, they deplete me of energy for healing.
Someone once had a good line for selfish, uncaring people... "Father forgive them, for they know not what they do."
Maybe that's all I needed to say.
Bug
[ 16. August 2006, 11:24 AM: Message edited by: bugabooboo ]
Posted by bettyg (Member # 6147) on :
You've all had great responses, and Karen; you were so right in everything you said.
I WANT HELP, I know I emailed you the link BUT YOU LOOK NORMAL and mentioned the SPOON THEORY too, both found in TREEPATROL'S NEWBIE LINKS at top of medical.
I've walked away from my unsupporting siblings who refuse to deal with I have 3 life-threatening illnesses. IT'S THEIR LOSS! They don't know what they are missing! lol Bettyg
Posted by treepatrol (Member # 4117) on :
Not very fun finding out how not important we are to friends and family is it. Reasons: scared,dont care, no time, etc . I know Iam dissapointed in a lot of people.
Posted by i want help (Member # 9786) on :
Thank You ALL Hello everyone--
Yes Bugaboo,I do like that line :Father,forgive them they know not what they do. He certainly was a wise peace maker. That is a nice way of thinking about it, though not always easy-but worth the effort I am sure.
I guess I need to figure out an approach/plan to cope with the people in my life and go with it. It still does not take away the hurt/surprise at just how much people are in their own little worlds.
It is isolating being out of work but I am trying to come up with manageable projects to keep busy.
Firepiper, I went to the EEG and am waiting. I should have Igenex back by the first week of September than specialist Sept 13.
i have stopped ABX for 2 weeks while waiting for test than I will resume.
Thanks all Kristin Posted by kelmo (Member # 8797) on :
I Want Help...I have watched my daughter lose all her "friends". She was sick throughout high school. Now all her friends are off to adventures and college. For that part, I think I shield her a little bit.
She got on the internet one night to catch up with friends and to let them know that she was still alive and all they could talk about were their college plans and trips to Europe. This put my daughter in depression for several days.
Many thought she left school because she was pregnant. God knows where they dreamed that up, no one had even called her in two years.
I told my older sister not to forget her niece, she needs support and kindness. She said, "I always remember her in my prayers". Well, I appreciate that, but sometimes we need a little note of love or encouragement, or a call to talk about a good book, etc.
Their lives go on, and, hopefully, they will see later. Until then, focus on the "now" and the goal of health, don't have expectations from anyone. Right now, it's just me and my daughter.
But, we are here for you, so please keep in touch.
Kelly
Posted by surg (Member # 6937) on :
What's hard for me is the length of the illness. It just goes on and on.
My friend's have had marriages start and end, babies have been born and grown up.
My Grandma has become senile and gone from her own place to a nursing home.
My friend's boss found cancer, went through chemo, and is almost well and that has only been a drop in the bucket of time I have been on antibiotics.
It's hard to be sick year after year and look at changes in 6 month intervals.
No one understands this. The world is going so fast and we are stuck in time just trying to survive.
Posted by cactus (Member # 7347) on :
You've had great responses, so I can't add much, other than we're all here in the same boat.
Have you ever seen this: "How to kill a sick friend"? Here's a link to it:
(Hope that works). Or you could search for it here, someone posted it not too long ago.
Some of my friends thought it was pretty funny, in a tongue in cheek way, and the second, serious, part is helpful.
Posted by lou (Member # 81) on :
My sister's church is praying for me. Very nice but I don't know these people and I would prefer to have friendly contacts with my sister instead, which are pretty much nonexistent.
Posted by Lymied (Member # 6704) on :
Hi there,
I am sorry you are experiencing this but know that you are not alone as so many have illustrated by their posts.
My husband, myself and our dog were all very ill. We only got one card from anyone and it was from my husband's work when he had to take a leave. I still have that card and it means a lot to me.
People have no clue what lyme can do. I could post a mile long post with all the misunderstanding and lack of empathy from numerous individuals.
I guess how I have coped is to remember what I thought lyme disease was before I contracted it. It is a beast of larger proportion then I have ever dreamed. People don't get that you can have a stroke from this...that you can die from this...that babesia is like malaria...they just don't get it.
Recently a friend of mine broke her foot. I called and talked to her. She had lyme, ehrlichia and I think babesia. She had been extremely ill and was dying. She is much better now. She has fought every step of the way and has employed a lot of alternative therapies.
Anyway, she told me the other day how many calls and volunteers to help her out...she said she took the opportunity to tell these people that she had been dying from lyme disease three years before and that this broken foot was no sweat. In other words, 'where the heck were you all then?'
I try to give most of my friends the benefit of the doubt but there are days that it is really hard to take and I feel isolated. That is when I look to those in my lyme family for support and it has been invaluable!
Take care and try not to be too hurt. Just know that they really don't understand how this disease hits or how many aspects of one's life it affects. I dream of the day when people will.
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Bettyg