People who distance themselves from you because you are sick..

Robby Vieira
I was sick for 7 years before properly diagnosed. I then found a functional medicine LLMD and we hit it with everything known to man (including some babesia treatment) I did not really notice much improvement. After three years and some problems with CIPRO I just went off the meds. I did not notice a backslide off abx. I did a LOT of alternative things - ozone, hydrogen peroxide, raw food diet, acupuncture...I even used a medical intuitive at one point -(desperate YES! But she actually turned out to be pretty helpful and specific,,,.. And oddly enough my MD relied on her at times :) .I never really noticed a huge improvement with any one therapy, however just really tried to take care of myself in all ways. I felt like I could do more and more things.. Two steps forward one back. I was playing ice hockey and skiing, maintained a large garden and lawn, I went through some very stressful times- teenage kid problems, parents dying, surgeries and while I was still not 100% held my own. I was always more tired than other people but really did everything. I got to the point where I didn't even think of lyme. This spring, for whatever reason, the tick borne stuff has reared up in a really ugly way. (Strangely enough, I did not recognize my symptoms as tick borne stuff this spring,,,but most definitely it is) ,I am as sick as I ever was. It has taken me by total surprise that I am back like this. I am hoping that I can again turn this around but yes, it is depressing to try so hard and have to live with the fear that all energies will have to be put into just existing. I do not have the map but it seems to me that many people do find their way out of lyme land......I want a magic wand!



quote="robby vieira"]did you get treatment back in 2007 and just had a relapse? Or you got better by yourself without proper treatment? Just asking because I'm so afraid of having to deal with this forever.

AK said...
I was sick with lyme for 15 years, returned to the living in 2007! I had nine great years until June of this year. I am a mess and never could have imagined myself this sick again. I went through the total loss of family and friends in the first round. It was so sad to me to have my family just sort of diss me.I felt like I could have used them more than ever. I think that they felt like it was a choice for me to hang around the house being sick. My brother told my mother that I needed to get out and ride a bike more. I remember that my sister one time yelled at that she "liked to do things" not like me who liked being cooped up at home. My Mother (who loved me dearly) talked about how my sister had "lost all of her dreams" when her good friend died. My mother had no understanding that lyme was not a choice and that it also was a loss of dreams. I am going through round two of this nightmare and I am already getting the eye rolls and the "when do the drugs start to work questions" .

I think that people are very judgemental of people with chronic illness. I think that they are bored of the same old story. It is a rare person that sees beyond the suffering to who we were before this happened, that we are not our illness. Yes, it hurts a lot. I want to cry thinking of all that I have missed and all that I am missing. I don't think that anyone knows how hard it is to feel this bad....And yes, it is just a huge loss. I miss my friends and I miss my family.....

I think there's a negative stigma when it comes to sickness and mental illness. People want to remember you as you once were, so they stray away until you get better.

I experienced all the neurological symptoms and vented them out to many of my friends. Many were disturbed and so they distanced themselves from me. I always said, "yes, I'm sick, I might not want you over but I need you over, so come over." I use to be a very outspoken and witty person and it seems that these infections have drained me of my personality. The few times my friends did come to see me, they were agitated when I talked about Lyme and didn't understand what I had. They wanted me to be my old self but I couldn't and so they distracted themselves with entertainment and trivial things.

I too babied myself and focused on simple, small daily tasks. I didn't have the energy to do the things I once could, maybe I can get back to that state but for the time being I need to focus on me. People just don't understand chronic illness, you don't know how it feels until you have it.

Post Edited (birthdaysuit) : 8/24/2016 10:40:31 PM (GMT-6)

... sigh... I wish I could get my Mom to understand that I have a chronic illness, that doesn't play by any schedule. She invited herself up for the weekend, which was great. But, her agenda included being very busy Saturday, Sunday and suddenly today (after we have worked our jobs all day). I am wiped out. She has always been in avoidance and it sucks. I guess she feels better by avoiding it, but it helps no one.

"People want to remember you as you once were, so they stray away until you get better."

I used to think this, but since I've always been sick since I was a small child, I have tried to make friends in many places since, and they still have zero understanding. I'm never offered help, not even in emergency situations, like when my husband almost died and I was running back and forth to the hospital daily to care for our dogs (I don't leave anyone in this hospital alone!!!!), and then getting back to the hospital as soon as I could. Many people knew what was going on in our lives at that point, yet not one of them ever offered any help whatsoever.

I agree that they don't understand, but what I find unreasonable is they have no desire to even try to understand or be sympathetic. If I can't go and do whatever they want, whenever they want, they never stick around long, so I quit trying. I'm kind of a loner anyway (partly due to this) so I just choose to not have any close friends in my area. My close friends are either my hubby and daughter, or those online. Fortunately, there are some really great people in this world that are also online.