Maybe some of you know the problem: When you feel terrible (which you do very often with lyme) how often should you tell other people about it? How often should you pretend youre fine when you are not?
My experience unfortunately is that people start to turn their back on you when you moan too often, even very nice and helpful indivuals and close family members.
So why do we generelly tend to tell others when we feel bad? I think you are instinctly doing it because you hope you are offered help. But this doesnt seem to happen with a chronic disease you have had for years. Instead you get on others nerves and become more and more isolated.
On the other hand its hard always to be an actor and smile when you feel like you are dying.
How do you guys handle this?
Posted by Summer3 (Member # 35286) on :
I do tend to tell close family members. Other people I am much more reserved with. Generally thought I don't lie and say I feel fine unless I'm dealing with a complete or near-stranger.
With me people can probably see I'm not fine anyway since my muscles are twitching, I'm pale as a ghost, I have bags under my eyes, I can't move my hands periodically and I've dropped a ton of weight lol.
Posted by sick (Member # 9143) on :
I fake it. It seems to work better. Like you say you tell them very often and they turn their back on you. Even family members will.
I also know it is hard to pretend when you feel like hell but after a while it just becomes a habit. I've done it for over 40 some years.
No one not even family members understand until they walk in your shoes. If you don't beleive me just wait until one of them has this (and as fast as this is spreading they probably will before you know it) and then REAL fast they start listening and understanding.
sick
Posted by gmb (Member # 23562) on :
I use to have more frank conversations with my friends and family on lyme and my treatment. Initially, I think I needed to be open and vent a little.
My long term significant other used to stop me and say "can we talk about something else?".
Now I don't bring it up anymore and if I'm asked I just say "I'm still in treatment, with some improvements" and change the subject.
Lately my GF has questioned "how long will you have that thing (PICC)in your arm? I think its all in your head". I've been on IV for almost a year, diagnosed and in treament for over 2.5 years, and sick since early 2008
Such a lonely battle. I feel our time together is getting short and she should move on with a more active partner.
Sorry to vent... maybe its the Mepron blues, or that Tindimax I started last week that's kickin my butt.
later
gmb
Posted by poppy (Member # 5355) on :
People mostly don't want to hear about it. And if it goes on too long, they get tired of it. What is so heartbreaking is not even to be asked how I am, by family members.
Posted by Lymetoo (Member # 743) on :
Not often. Choose your victims wisely!
Moving to General Support
Posted by amk33 (Member # 13206) on :
Rarely. People treat you like you are weak, and a complainer. The truth is, if they really knew how I felt, while continuing to work and support myself and my son, they would be amazed at how strong I am. I am stronger than any of those people, who have no clue what it is like to suffer every day, and have to pretend like you are okay, and try to carry on a "normal" life. And yes, these people are family members and friends. I can't blame them, however. If I never experienced this, I wouldn't understand it either.
Posted by randibear (Member # 11290) on :
I don't. They don't care and refuse to understand. Somehow it's always my fault.
Yes it does sound bad for your relationship. Looks like an accident waiting to happen.
Posted by Catgirl (Member # 31149) on :
I just tell people I'm fine. Whenever I've told them how I really felt, they stopped calling altogether. I guess people really don't want to know, they just ask to be courteous.
I think we are all stronger. Our eyes are open to this disease. People who don't know about it or don't understand it are sheep following their doctors and/or belief system. They simply don't know.
Posted by bellajo (Member # 28738) on :
When I tell my older parents how I really feel they worry. My father told me to quit my job. REally? Hard to survive without it.
At work, one person knows my condition and listens. She's great. I don't tell her too often.
It's tough.....
Posted by jessicabooklover (Member # 39427) on :
This is a really hard question...I tend to just act like I am fine but I am so obviously ill now that people can see through it. I am a really shy and quiet person anyway, but if people that I care about ask me how I feel now, I tell them honestly but I don't belabor it.
Its such a hard balance to strike, but I am kind of a stoic and I tend to just shut up and power through. It is probably not the best approach, but I always fear burdening people. Jess.
Posted by Robin123 (Member # 9197) on :
I think it's good to have some people you can tell the truth to, like at a Lyme support group or very similar, because people going through what we're going through understand.
Unless someone has had a similar experience or watched/cared for someone who has, I don't think many others understand the strength it takes to go through a chronic condition.
Sometimes when I've told a regular person, they become alarmed, since they can't imagine going through this, and then they think I can't do anything, which is not true. Or they just don't get it. Or they don't want me to depress them. On and on.
I find it easier not to go into it with others, but to stay in charge of the managing part, like set my boundaries re what I need without explaining it much.
Re managing - to pick out a part of it and set boundaries for it, like say I have a bad hip, which is true, but not tell then every joint is bad!
Posted by sick (Member # 9143) on :
No one seems to care or even be interested UNTIL they get sick TEHN THEY LISTEN!
Well too bad for them. They saw how I lived. They saw me suffer for years.
They didn't listen to me when I told them how to protect themselves. They ignored me when I begged them.
Now they are walking in my footsteps. They are sick.
AND NOW THEY WANT TO TALK!!! I say bull s_ _ _!!!
Posted by PatriotM (Member # 38493) on :
Healthy people don't want to hang around with people that are always sick and/or complaining. That includes spouses and other family members (even though they may say otherwise and even though they genuinely care about you). Therefore, when someone asks how I'm feeling, I always say "fine, how are you"? I also frequently do things and go places when I feel terrible for the same reason. Besides, often doing things helps take my mind off how bad I feel.
Posted by Robin123 (Member # 9197) on :
Sick, you bring up this very important issue of how do we get anyone to listen - I am experimenting with scaring people and I think it's working - and no, I don't mean Halloween tricko'treating them...
I mean, as in asking them point blank how would you like to lose x, y, z, etc in your life, or see anyone else you know lose theirs, as in your health, activities, job, money, relationships, etc. We need to be able to connect the dots to folks who do not yet have these illnesses.
I finally connected with a doctor when I told him someone here got it when their dog brought the tick inside the home and the person got bit inside the home. That caused his eyes to widen as he said he was walking someone's dog the following week. Then he listened to me.
Maybe we haven't found the right topic trigger yet when people don't listen.
Back to the subject of this thread - not sure I want to depress everyone else out there when I'm feeling bad - I prefer to save that communication for other Lyme patients who understand,
but where we should be able to have an impact is in finding out how to bridge this gap between those who have this and understand, and those who don't and don't understand.
Posted by kam (Member # 3410) on :
NOt able to read wha tothers wrote. I just keep to myself most of the time.
Too low on health to have a conversatioon.
and when people do ask me how I am doing when I go out to toilet Rosie in the power chair..I say OK and roll on by.
I'd ask them how they are doing but health isn't there yet.
Posted by desertwind (Member # 25256) on :
Only my husband. But he gets it because he has TBI's as well.
If a family member does ask how I am feeling I tell them the truth. If they do not ask I do not tell....
I sometimes do not even tell myself...
Posted by debilyn (Member # 35753) on :
"I sometimes do not even tell myself..."
Oh, man, I sure get this, and I do it too. Not sure if it's a good thing.
I think I would still talk to a former friend who ditched me when I got sick, then got sick him/herself, then was ready
to talk to me about the illness. I think most people are just uninformed and can't imagine the suffering, the horrors
that come with Lyme-and-friends. I might have been them if our situations were reversed. I might not have believed
that there is such an insidious illness out there in our world. I would like to think I would be more compassionate, but I was
different before Lyme, had strong opinions on what kept people from achievement and what didn't.
I never realized before Lyme that there are some days when no amount of inner strength, determination, or resolve
can get me up and functioning or change the status of my illnesses. We with these diseases know more than those without.
We need to cut them some slack if possible to reunite as a community especially should they change their mind about us
and understand better what we are going through.
Posted by twicebitten (Member # 5412) on :
I usually just smile and say, I'm okay, because I am. If I'm able to be out and about to see others, I'm okay. Maybe I'm not having a great day, but ok.
Now, my mother can tell by my voice on the phone how I'm feeling. When she calls, after I listen to her issues, I tell her the truth (well mostly).
My spouse has learned that I'm probably not ever 100%, so I usually don't bring anything up unless it's new stuff. He can tell by my activity levels about how I'm feeling. He'll say something like, "feelin' bad?", or "you on deaths door", or whatever.
Usually when I'm having a good day it's not mentioned at all. Both my kids are finally pretty sympathetic. It wasn't always so. My youngest has battled this stuff too, so she gets it a little better, but she's a preteen now, so very self involved. Which is OK, I want her to focus on her stuff.
Only when I am unable to do something with or for one of my kids do I bring up my health. ( or hubby for that matter)
As far as friends (except one close one that has health issues too) I just smile and say "fine" or "Okay". They don't really want to know for the most part anyway.
I figure if I am able to get out to church on Sunday and someone asks how I am, I am not lying to say Okay!!
Posted by Keebler (Member # 12673) on :
- I can't read all the replies but, with the holidays approaching, just offering a bit of a warning here to avoid pitfalls.
Q: How often to tell others that you feel awful?
First, WHY do you want to tell others?
This is a serious question. WHY would you want to tell others? And just WHOM?
Rhetorical questions, a check list of sorts.
Now, if it's someone who needs you to do something for them, explaining is important but it can be very basic, like:
"my body just can't do that right now." or "let's think a bit about how else we might get that accomplished."
From my experience, I've gone down the rabbit hole and regretted it so realize that disaster struck more often when I was feeling lonely -- or perplexed about symptoms.
I learned NOT to dump any of that on anyone else.
Resist all drive to do that if you want someone to understand what you are going through. If they are close and really want (or wanted) to know, they would have already asked and learned.
Remember that most folks just can't handle the truth. It's a rather horrifying experience, all this. And most people just can't deal with that.
Choose wisely, the one or two in your your inner circle.
And a few more in a bit wider circle.
And become strong in your own right, knowing that this IS real and rough and try to just set that fact aside and talk about other matters of the world, of arts, nature or fun.
Have just one sentence that says all you need to say. Beyond that, conversations can grow, or not.
Hold on. This can be lonely but just knowing that it can get better does help. -
Posted by Keebler (Member # 12673) on :
- Q: On the other hand its hard always to be an actor and smile when you feel like you are dying?
I don't think it's a good idea to lie or fake it, either. Be honest but "clean" in statements - not expecting anything in return other than that they hear you and register it.
If they know that we don't expect anything of them (well, other than those in your family or inner circle who might need to pull their own weight better or who could help if they only knew how --
you can guide that as a manager, of sorts. This takes the emotional weight off as they then know what can help. Likely, they will be glad to do so.
My mother was very ill and kept it all to herself. I wish I had known HOW to help. I just got too scared by what I saw and when she never said anything, it was easier to just ignore it, then, and pretend. THAT was of no help to anyone.
Go with HONESTY, but keep it "clean" and simple - "just the fact, M'am." Now and then, a short statement of emotion is fine and will go a long way. "Yeah, this is not what I ordered but, hey, let's move on . . . ."
Still, have ONE or TWO Friends with whom you can spill all your emotions and fears. Seek out a LL counselor for guidance, too, not just for expression but help in how to sort out how to communicate with yourself and others. -
Posted by FamilyFive (Member # 37206) on :
My mantra when I'm feeling bad, and am asked is, "I'm hanging in there." And then I move on.
I fortunately have 2 close family members I can talk to when I need to vent, but the majority of my close friends/family don't really understand lyme. If I complain to them, they don't get it anyway!
And it's hard for people to have empathy for something that they don't understand.
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