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Are you open about your disease with family?

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Lyme Disease
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Posted 11/9/2013 7:25 PM (GMT 0)
For example you're at a family event and someone mentions that you look skinny or something.....

Personally I'm not always open about it because some people act weird with anything medical related, on the other hand though if it's someone who doesn't mind talking about anything and they genuinely ask I have no problem talking about it, also with friends and family I'm closer with I don't mind talking about it either. I wont bring it up for no reason tho.
Posted 11/9/2013 7:49 PM (GMT 0)
I talk a lot about everything, and I'm fine talking about Lyme Disease, but (like you) I won't bring it up on my own. While I'll talk freely about the disease itself, I don't "share" how I'm feeling that much. I've had lots of friends and family members tell me I look like I'm doing much better on days where I feel like I'm dying. I hide a lot of my symptoms from everyone, only really opening up to my wife, and that's a rare occasion. That puts me in tough spots sometimes because no one knows how I feel. Sometimes I worry that people might think I'm faking all this for attention (which is another reason why I don't bring it up on my own). I'm sure most of you can relate to that feeling when it comes to neurological and psychological symptoms. For a year and a half (before I tested positive), I couldn't even convince myself that I wasn't faking it all, so I can't expect other people not to think it. Anyway, that's why I feel it is important to talk to people about what you're going through.
Posted 11/9/2013 9:40 PM (GMT 0)
I often talk about it, in part to make people more aware of it since it's not as prevalent here as it is in the east. Often I bring it up when people ask what I do, so I tell them my daughter and I have it, so we don't do a lot and then give a brief explanation. Sometimes people will ask about it and sometimes they say "oh" and that's the end of it. I hope I've made a few people more aware.
Posted 11/9/2013 11:07 PM (GMT 0)

Ccbrunk said...
  For a year and a half (before I tested positive), I couldn't even convince myself that I wasn't faking it all, so I can't expect other people not to think it. Anyway, that's why I feel it is important to talk to people about what you're going through.

Well said CCbrunk... So true and so sad....

 

Posted 11/11/2013 12:12 AM (GMT 0)
LOL! More than they like???? Oh well, if I am asked a question, I'll give the best and most appropriate answer I can. I also tell them that if they ever have any questions, to please email me or call me. I've had a few family members take me up on that offer!

I live in an area where the doctors don't even understand what they are looking at when they see the Bulls eye rash!! They will tell people to wait for a couple of weeks to see if the rash disappears, then when they go back and the rash is gone, the doc declares "See? I told you it wasn't Lyme!" smhair

So for me, getting some basic information out is crucial.
Posted 11/11/2013 12:35 AM (GMT 0)
When I was sick with lyme, I tried talking to my family about it, my now ex-husband, friends, etc. but no one understood (especially my family and my now ex-husband, one of the reasons he is an ex).  Today my friends ask me about lyme all the time and want information which I am only too happy to give and offer them support.

Denise

Posted 11/11/2013 12:51 AM (GMT 0)
I talk to my family about it but they have no clue to all the symptoms I experienced. Actually, when I re-live the horrific times I was most sick it gets me in a funk. I like to stay positive and move ahead which at times is difficult to do. I do mention I have Lyme's disease and its co-infections to many people and take my lead from there. I cannot tell you how many people I have met who have had treatment for these infections. I shouldn't be that surprised living in NE PA.

Patty
Posted 11/11/2013 1:59 AM (GMT 0)
I can talk to my mom, but that's it.
Posted 11/11/2013 3:31 AM (GMT 0)
I went thru a two year period of deep depression. One year living with my Sister, could hardly take care of myself. Got control with meds. (never felt comfortable taking them). I think it had nothing to do with lymes. Now I have lymes and I just feel like my dance card has been punched. Try not to talk about it to much to my family. I do feel that it is important for people to know lymes is in Oregon, so I do talk to selected friends.
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