When family members aren't supportive

Well, my husband doesn't have a choice...because I talk about what I'm doing and how often...etc. While, he doesn't educated himself, he hears me talk about it. I'm pretty sure sometimes it's like the Charlie Brown comic strip with the teacher in the background "whaah, whaah, whaah" and he's not listening...lol

He has also recently tested positive...so he does want to learn, though.

Sometimes, after two years now...he is on the insensitive side...but I think he's suffering from the 'long-haul' treatment I'm doing...and wants our life back.

I had the same thing going on with my dad in the beginning. I've been having health issues since I was 15, am 36 now. He was very hesitant about the Lyme diagnosis, but over the 3 yrs of treatment, he has completely turned the other way. It makes sense to him now. It helps that my sister is infected too.
I'm the one educating all of them. My sister is avoiding it and just following our dr's instructions, but calls me at least once a week for advice.

Girlie, you're making me laugh, it's like my DH and me, I'm blablabla and he's not even listening... the guy doesn't have a choice.
But he started listening every now and then, since we have very strong beliefs he's infected also.
And he's getting impatient too...

What helped my husband the most was seeing 2 different kinds of documentaries: the ones that have info and personal stories, and then the purely informative documentaries. He never terminated an entire documentary (his ADHD certainly has to do with it, cause we never finish a movie together). But it convinced him that there IS a problem.

Other people that make me feel that they don't believe me are out of my life. I'm sure they will be back.... for some serious talk if they really want to come back.
A few friends have taken the time to watch a documentary that was on national television and let me know they did.

I came on here today to write a post about how unsupportive one family member has been today!

This morning my mom's dog went number 2 all over my carpet (I live downstairs). I scrubbed it clean for over an hour - crying the whole time because my arms are incredibly weak and this not only hurt and made my arms weak and twitch like crazy to the point where I had to cancel an appointment because my arms were too weak to drive there, but it also gave me FOUR asthma attacks!

My sister was coming over to use my mom's pool, so she brought her carpet cleaner which was nice. But then she wouldn't help me use it even though I was in tears explaining to her that I was barely able to move from the exhaustion!

Then as she was leaving her lovely relaxing pool day she comes in to say goodbye - I'm sitting on my bed with a castor oil pack (which involves me wrapping myself in a garbage bag to protect my bed from the oil) and laughs at me, asks me mockingly what I'm doing, and I just very calmly explain to her what I'm doing and why, and she continues to laugh - "well have fun with that!"

It just stings to be mocked incessantly by the majority of my family and most of my "friends".

Luckily my mother who was nonbeliever #1 over the years has finally changed her tune, and my boyfriend (who I can't marry because I would lose my SSI benefits) is incredibly supportive. It breaks my heart that some people don't even have 2 people in their lives like I do who are supportive.

My father calls my disease "fake-ititis!"

I know that my boyfriend said going this lyme disease conference (a pretty low key one for patients not like a big one for doctors and stuff) helped him a lot to understand this disease and to feel supported himself.

I even tried to go to a support group recently but there are none in my area apparently.

I've been pretty supported by most people, I mean, I live in a small town and worked in the public and was so outgoing.... When I started having health issues, I reached out to so many people, some md's......I remember my first visit to the walk in clinic bc I couldn't breathe-it wasn't the asthma I grew up with-I guess it was air hunger..... That was 14 years ago! That doctor prayed with me :)

That's when my journey really began....

My mom was a little on the fence, but after liking and seeing Yolanda struggle on the housewives show and knowing $$$ isn't an issue for her.... She started seeing things through my eyes more and how difficult this is to overcome.....

Awareness sure helps

Boy, this is great to hear my experiences confirmed by others! I have a great sibling family, but without having experienced lyme themselves it just seems like whining. If I am feeling sick at a function, I make an excuse to go home.
One great thing is that they tell me that they love me. I need that. I sometimes think its good I never had any kids and that I am divorced because I don't have to put up with the eye-rolling.
Is it childish to want to talk about the pain and difficulty? Should I simply buck up and be positive.

I don't know.

Tom from Minnesota

I'm a little late, though just had to say, I would totally end up murdering someone, if I dealt with that, borderlyme. Ha, no joke - there would be bodies, we'd be on the news. I'll admit, a part of me hates to admit that, but that sort of treatment is beyond ****** up.

I mean, I've dealt with my share of it, but not to that extent. Maybe if I actually reached out to more of my family about it? I've only really appealed to my mother and grandmother, and some online friends - they get it, kind of, but nowhere near what I'd like. They still make insensitive comments about it, sometimes.

But, yeah, I sort of just got tired of trying to explain it to people, pouring my heart out, all the pain, all the loss, rattling off symptoms, talking about how hopeless it is, only to be met with the "I"m sorry's," "try to live with it," or, from my mom, the "we'll get you some help," when her only recommendation is that I see a doctor, a regular doctor, as if I haven't dozens of times already.. without avail. Talking about it, to anyone other than people here, has gotten me relatively nowhere. Why bother?

I'm pretty much on my own with it. My grandmother helped me pay for some stuff for awhile, but it wasn't enough. Then, the support was only financial. I've gotten some encouragement from a few friends, people here, over the past couple years. Really though, as much as it's appreciated, only health's gonna lift my spirits, and, apart from a lot of your, AGAIN, valued insight, I'm alone.

I was going to say more, but.. my mind's left me.

Sorry you guys have had to deal with the poop, all the poop.

Best of luck..

Cya..

Well, I for one don't think you would be better following your Father's advice!!! Good grief!! I wonder how he would feel if/when he gets sick and someone in the family told him that? I'm so sorry that you had to find that out, Ginger!

I've had a lot of difficulty with support from family too - and I never have "friends" for long, once they find out I stay at home. But that's okay, I'd rather know up front that they don't wish to be around me because I'm not up to running around with them. I'm okay with being by myself most of the time too. If I want to be around people, I can go out, but I always find I'm so grateful to get back home.


But the lack of family support is hard to deal with. I learned that I had to do this for myself, although I do have a daughter that will listen to all of my woes, I try to not always unload on her as I need that relationship to not be one sided (even if it is finally my side that is heard!) because I love her and only want the best for her.

It's likely easier for me to deal with this than for most, as I've always been this way. I've had some of life ripped away from me, but most of the time I was never a part of other's lives since they didn't understand what I was going through, couldn't work and surely couldn't run around, even as a teen/young adult.

One day we will have validation - we will win it for all those that come behind us!! We have to. We have to get validation and recognition. I'm doing what I can to make it happen too!!