To share or not to share...

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sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 386
   Posted 3/29/2018 11:33 AM (GMT -6)   
I've been wondering how people deal with sharing or not sharing their diagnosis and/or details of their illness with the wider world.

This has been one of the problems in the back of my mind on and off ever since I finally came to terms with the fact that I have lyme. I might never have realized it was lyme had a colleague who is a self described 'Lyme Warrior' not shared their own experience - I'd suspected it for a long time but not realized that the bulls eye rash was a definitive marker or that there were other treatment options. I am _so grateful_ that this person was willing to be open and vocal - I think it is incredibly important that people talk about this!

But I'm just not that that person, at least not yet while I'm in the thick of things. I'm apt to feel defensive, and quite frankly it's all I can do to keep from breaking down into tears on many of my good days let alone the bad ones. My closest friends and family know that I'm sick but, as many here have also said, I don't think they really grok what that means and for the most part that's fine with me, that's just the nature of invisible chronic illness. Until you've been there you don't know what it really means, I know I didn't.

One of the things that really surprised and saddened me, though, when I started cautiously sharing was that it turns out that a lot of people are also quietly going through the same thing themselves or with a family member. That just feels so so wrong to me. So I try to share more often in the hopes of making those connections when they're needed but it's hard not to feel like I'm just complaining, or garnering sympathy most of the time.

How's everyone dealt with the 'to share or not to share' question? Does it get easier over time. Have you just given up or become more vocal? Is learning not to give a @^$ going to be one of the upsides of being ill as I could probably use a healthy dose of that in my life ;-)

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2040
   Posted 3/29/2018 12:00 PM (GMT -6)   
I have probably shared too much with too many in a desperate attempt first to find answers and later to be understood. I was sick for 6.5 years with a "mystery illness" before getting a positive Lyme test after testing with 3 different labs. Everyone who knew me knew I was sick because I told them and I had been tested for all sorts of things and only got "normal" results on all tests. I was always searching for any clues as to what on earth had happened to me, as doctors had failed to find the answer.

I also have sensitivities to mold and chemicals, which considerably complicates everything for me, including interacting with people. Telling people I have mold illness, chemical sensitivities, and Lyme disease hasn't garnered any "understanding." If anything, it has isolated and ostracized me even more than suffering with those dreadful symptoms. I guess it's a good thing I'm kind of a loner. I do have my parents. They are the most supportive people around me, but they still don't get it and often unwittingly contribute to my symptoms.

Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 386
   Posted 3/29/2018 1:31 PM (GMT -6)   
I've probably shared too much also... But it seems like every third person I talk to either has lyme, knows someone with lyme, or has lyme-like symptoms or other health problems.

I have to be especially careful when I don't feel well or I have a fever. I just blab on and on and I don't realize what I'm saying. Also it seems like people react differently when I'm not feeling well.

I know how hard it is when you can't even say you have lyme... Everyone just thinks you are nuts. Since I realized I still had Lyme it's gotten better, but I really have to work to avoid talking about it because it seems to over shadow my whole life sometimes, and I am really bad at thinking up anything interesting or relevant to say to anyone anyway.

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 397
   Posted 3/29/2018 1:54 PM (GMT -6)   
In the beginning I told a few people. I wish I hadn't. I do not like to talk about it or draw attention to myself. Luckily I realized the strange controversy of Lyme land fairly early on and stopped sharing with new people. Luckily I did not tell any work people.

I wish I was brave/strong enough to "take one for the team" and become a vocal Lyme warrior...

I am just too scared to risk going around talking about having an illness that some believe does not exist, igmaginary, does not exist here in my region, or is easily cured with a round of doxycycline. I worry people might think I am crazy or trying for attention or something.

So I stay silent. Maybe someday...

sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 386
   Posted 3/29/2018 2:01 PM (GMT -6)   
Oh WalkingByFaith, I'm so sorry - six and a half years of mystery is awful. I think the isolation is one of the hardest parts.

I was surprised by the same thing notime4lyme! So many people dealing with lyme once I put feelers out there which is one reason I feel obliged to continue sharing, at least a little bit.

Missouri - same here. I'm on the 'crazy side' of the diagnosis as I test negative which gets tiring explaining. I admire the vocal warriors but I don't know if I'll ever be one. I'm glad they're out there though.

I'm finding trying to integrate this whole new side of my identity is one of the harder parts for me. I don't want to be completely defined by lyme but it is a big part of what's going on in my life right now. Just pretending to be normal all the time wears me down but then I guess I'm in this for the long haul and I need to just tuck it in there somewhere.

I get that no one wants to hear the bad stuff but no one wants to hear the good stuff either - I tried once to share with some friends some of the blessings lyme had opened up for me as I really try to look on the positive side of things but that was just as awkward, maybe more so lol.

I'm glad to be here. It's nice to feel that you can toss something out and be understood. It's been a while since I've felt that way. Thanks everyone!
Bulls eye rash August 2013
Started treating with Buhner herbs July 2017
Treating Borellia, Babesia and Bartonella as of November 2017

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 397
   Posted 3/29/2018 2:32 PM (GMT -6)   
Yep that is probably another reason I hang around here too. The members here are amazing. People that are well/healthy just don't want to hear about it. I totally pretend to be normal too.

I think there just needs to be just one big lawsuit win, or one big news story, or the right famous public person get exposed and need extended treatment; once that happens it may be easier to discuss openly.

Although AIDS went through this 20 years ago, I bet people with AIDS are remiss to share openly...

sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 386
   Posted 3/29/2018 2:57 PM (GMT -6)   
I keep thinking that too Missouri - that it's the same cycle with each 'new' disease that comes up and we're just unfortunate enough to be on the edge of a disease that doesn't yet really exist. Ten years from now it will be quite different and we'll just have to deal with coping and not all the 'crazy' side of things.

I think too, that as strange and scary as everything is for us at times, people never do discuss health problems much outside of a close understanding circle. I mean, I have a couple of friends and family with afib so I know a bit about what they go through and how it affects their life but I suspect they don't talk about it much so I'm not sure why I think it would be any different for us. I'm hoping it's just a phase, like anger and denial and I'll move into 'just getting on with it'. I wonder if the feeling of it being a non-existent-illness makes it just a little bit harder to move into that last acceptance phase though.

In the mean time you're right - the members here are amazing. :D
Bulls eye rash August 2013
Started treating with Buhner herbs July 2017
Treating Borellia, Babesia and Bartonella as of November 2017

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33927
   Posted 3/29/2018 2:59 PM (GMT -6)   
I have some friends that I haven't shared much of the details with...and others' who know a lot of my journey so far.

My self esteem has suffered with this disease. I'm used to running, playing tennis, bike riding...and being carefree. And I used to have a really good functioning brain.

I do have one sympathetic, understanding friend...who I am meeting today for tea. She recently said to me "I don't know how you handle all those symptoms" She said this after she was on abx for a week for a UTI and she got some nervous system side effects...shivering/chills...achey for about 3-4 days - and I told her that's how I've felt for a few years. lol.

I am hesitant to post/like fb pages about lyme. I don't really want to be identified as that person...I guess.
I have been more open lately...maybe because I have had some better days recently so am feeling stronger emotionally, physically.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Szabo246
Veteran Member


Date Joined Sep 2017
Total Posts : 505
   Posted 3/29/2018 3:47 PM (GMT -6)   
I’m terrible, other than my husband, my mum and dad nobody knows! A few friends know I got bit and took a course of antibiotics but that’s it. I don’t know why I feel so uncomfortable talking about it, but I do.

I wish I didn’t as it can be quite isolating, I even asked my gp once do you see many people with lyme and he said no, I wouldn’t wish it on anyone but wish I knew people with it that lived local to me

You guys have been great. Appreciate you all so much smile

sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 386
   Posted 3/29/2018 5:48 PM (GMT -6)   
Thanks Girlie! It's helpful to hear that even when you're confident enough to moderate that you can still be hesitant about sharing in the wider world. I found the changes a real blow to my self esteem as well, especially since they snuck up on me and I assumed for a long time that I just wasn't coping well with normal life stuff. That kind of self criticism tends to stick. I hope you continue to have more and more of those better days.

Szabo246 - I'm sorry to hear you're so isolated. I really don't know why we all find it so hard to share. It makes no sense to me whenever I try to think about it rationally but there it is. I am so relieved to hear that this reluctance is so common. I'm feeling a lot more peace and clarity with myself for preferring to mostly stay quiet after hearing everyone's stories. Thanks so much everyone!
Bulls eye rash August 2013
Started treating with Buhner herbs July 2017
Treating Borellia, Babesia and Bartonella as of November 2017

acarined
Regular Member


Date Joined Jul 2015
Total Posts : 231
   Posted 3/29/2018 7:36 PM (GMT -6)   
Missouri said...
I think there just needs to be just one big lawsuit win, or one big news story, or the right famous public person get exposed and need extended treatment; once that happens it may be easier to discuss openly.


Bite Me: How Lyme Disease Stole My Childhood, Made Me Crazy, and Almost Killed Me
by Ally Hilfiger (Author),‎ Tommy Hilfiger (Foreword) wink
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