posted
Talking to people annoys me, frustrates me, angers me and makes me terribly fatigued.
Here's the thing: I hate it when people ask me, "What's going on? How are you?"
I hate it because they expect new answers and I have nothing new to report. My life is always the same, I always feel sick, everything I want to do is always on hold. It's ALWAYS the same story and I hate repeating myself over and over again.
I hate listening to my own Lyme story. I hate repeating all my symptoms for the sake of other people who should know my symptoms by now.
I can't even talk/write to them about other stuff as my entire life is going down the drain. The Lyme- and non-Lyme-related stuff.
When I get an e-mail, asking me what's going on, I immediately shut down mentally and emotionally. I don't even want to respond. And often I don't.
How do you handle the ubiquitous "What's going on?" question? I already told the people who ask it, that there is nothing new to report. I already told them that it's a question that bothers me.
Yet it comes up over and over again ....
I am so frustrated. Answering that question makes me feel even sicker than I am. I wish I could turn off my phone and e-mail ...
[ 05-24-2016, 08:58 AM: Message edited by: Nula ]
-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
| IP: Logged |
posted
If I don't want to talk about it I tell them I'm "hanging in there" ...for some, I tell them "I'm OK." I'm evasive.
If I have to say more, I tell them I don't really feel like talking about it right now, but thanks for asking.
Hope that helps!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I jus say ok and then real fast how are you?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Oh I know what you mean.
But also, I really don't have the energy to interact because ALL of my energy goes into managing myself and treatment.
I don't bother explaining this to anyone except my close family who need to know. I don't do it as a conversational indulgence, I do it so they can be aware of what's happening.
To me these are really boring conversations. I am not interested in it; don't expect anyone else to interested in it.
It's like if you just got this new job and the job was "Stapler of Things." You have to do the job, you have to think about it but obviously even your own eyes glaze over.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
posted
I completely agree. I had that same feeling of annoyance every time someone asks me "so how are your symptoms now?"
You have to realize though, these people are asking you how you're doing and trying to understand your situation better by asking about your symptoms and checking up on you, only because they care. You don't have to give detailed responses but I would try to keep that in mind.
............................................
(breaking up the paragraph for easier reading for many here)
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Sometimes I don't know if I get more annoyed at the people who ask or the people who DON'T ask.
Agree with the other advice - just say oh not much is new, or same old, same old, I'm ok, hanging in there and then turn the topic to asking about them.
Posts: 1737 | From Virginia | Registered: Aug 2011
| IP: Logged |
posted
Agree with WP - I stay real brief, and switch to asking them how their life is going, or some other topic that I would rather chat about, something of interest, maybe.
You need to judge what level of energy you have for engaging in conversation.
They really don't understand, and they're trying to make a connection with us. So I honor that they want to connect with me, and I find some other way to do it, like focus on another topic.
If they REALLY want to know and can handle it, then I go into it more. But, they need to be the type that can listen and empathize.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
People stopped asking me. In fact, no one I know or am related to has called me in over 2 months. I guess everyone has their own problems to worry about? I don't "talk about it" and am always the one who calls others to ask how they are.
I stopped doing that and the calls ceased altogether...
Now? Totally alone......only calls I ever get are from my local pharmacy to check on their next delivery or if insurance won't cover a script.
So alone.....and no one even knows it. Such a strange feeling after coming from a big family and lots of work associates over 30 years.
I can literally say, no one even thought of me today or in days passed........ not a great life so if someone is still asking you, tell them you appreciate them asking and that you're doing ok, then move on to them?
All I got dear friends....and all I have left. Posts: 867 | From PA | Registered: Jan 2006
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
When I was sick with lyme, I said the following to those nice folks who cared and asked me all the time how I was doing:
"With what I have, I am not going to feel different from one day to the next or in a short time. I am going to feel the same for a good while. The treatment takes a long time. So, I feel the same as yesterday (or the last time you asked me). Thanks for asking me."
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
Thanks all, I so appreciate your responses.
Healthywealthywise, you made me think. It scares me to be totally alone.
Then again, the people who ask me aren't close to me, like my family. I do talk to my family about my problems (I actually WANT to talk to them).
AndyR, yes, the "How are your symptoms NOW?" question is another gem; along with "Why aren't the meds working yet?".
I've basically said all of the above (close to what you wrote, TF), and yet, questions still keep coming. I just don't know why, but it almost seems like my situation doesn't sink in. Like they will never understand the massive impact this disease has on daily life.
I don't expect them to understand Lyme and its co-infections, but if I tell someone, "It's like having the flu for days, and months, and years on end," you would think they'd get the analogy!
I also tried the "I'm okay. How are you?" and the "I'm hanging in there" route.
But if I tell them "I'm okay", they expect me to be in touch more.
Some of them are work aquaintances (I'm a freelancer), and when I told them I was okay, they ended up sending me job offers, which I had to decline, which, in turn, pissed them off.
One of the most frequent "askers" is my ex-boyfriend, whom I've told all my symptoms and issues in detail over and over again, and yet he regularly asks me, "What's going on?"
He wants to connect with me on an emotional level, and I have no emotions left for anyone besides my family.
Jordana, you wrote, "But also, I really don't have the energy to interact because ALL of my energy goes into managing myself and treatment."
Yes! That's it! I keep telling people over and over that all my energy goes into managing my day-to-day "sick life". Yet I get e-mails saying things like, "I sent you an e-mail five days ago, but haven't heard from you ..."
Sometimes I don't even check my e-mail a few days in a row. It's like I tell people how sick I am, and they say, "Oh, how horrible!", and then they turn around and expect me to interact with them in a timely manner.
I guess, the "expectations" are what bother me the most. They want to hear from me (for private or work reasons), and they expect me to respond (phone or e-mail) the way I used to.
My explanations don't seem to sink in at all.
Sometimes, I feel kike cutting them all out of my life as they cause me additional stress ....
-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
| IP: Logged |
hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
I usually tell them that "I am taking one day at a time," and then switch the conversation.
My true friends know when to ask but more often they call and tell me they are running errands and what errand can they run for me.
My co-workers are very supportive as is my church and they seem to understand when I don't want to talk about how I feel.
My acquaintances that I thought were friends did not last long once I got Lyme and that hurt, but I have moved on.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8879 | From Illinois | Registered: Aug 2004
| IP: Logged |
posted
There's a spoon theory that addresses some of this - google for spoon theory by Christine Miserandino -
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Also consider sensory sensitivities here. Hyperacusis is something that often goes with lyme.
And some telephones are just awful to use - even if someone is calling FROM a cell phone, I find that my land line phone will often "warp" or cut out . . . or literally "stab" me with various kinds of sharp auditory swords through the phone right into my ears.
Hint: as so many no have no land lines. Tell those with whom you speak regularly to call you only if their cell phone is WELL CHARGED and they are in a good reception space, still & not moving about.
Phone systems (as with a business with some kinds of supped up microphones on their end),
or most speaker phones also have similar assault patterns. Speaker phones have caused me major injuries when someone in the background decided to shatter glass vases on a tile floor - or, oh, even close the window blinds.
My experiences may be on the extreme end yet even more subtle audio / sensory issues can also account for some of the hesitancy / lack of just being able to communicate on the phone.
In public, there are so many other variables, too.
Even if one does not have hyperacusis, the "mere" act of interacting requires so much work for our brains & ALL senses -- and adrenal systems. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Yeah, it is hard because people are wanting to get together and when you can't do that, they lose interest after a while.
I was doing better, but am now going backwards and have heard from an old highschool friend. She wants to get together. Not sure how to handle it. Some days I'm better. Some days I'm worse. I hate to make plans and than have to cancel.
I wish there was better publicity/education about this and similar illnesses so people would understand. They still think we can take a pill and be well.
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
If some of these people are energy suckers, then perhaps it wouldn't be the worst thing to take a step back from the relationship, and let some of those relationships fall away.
I have lost touch with a lot of people because of Lyme. But none of those were actually a huge loss.
I have limited energy and I use if for my family and the special friends who are understanding and supportive.
After you have a interactions with each of these people you are telling us about, ask yourself if you feel supported, heard, happier, etc? If not, then why are you hanging on?
Posts: 1737 | From Virginia | Registered: Aug 2011
| IP: Logged |
Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
So true WPin. We can't be around "its all about me" people.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
Printer-friendly view of this topic