LymeNet Flash: family is divided over Lyme

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Posted by cactus (Member # 7347) on :

I'm finding that my family's patience is wearing thin, now that I'm in my 2nd year of treatment, and still struggling.

Tonight I will be missing yet another important family event, and my absences are becoming inexcusable to some family members.

Have to ask... Is this about the norm for the family of a Lymie?

My (extended) family is splitting into factions - either they are:

1) Very supportive, lyme literate, and helpful

2) Mildly tolerant, but somewhat disbelieving (As in "I know you've been sick, but shouldn't you be well by now?"). Visibly tiring of the topic of Lyme.

These are the ones who ask, "How are you?" without wanting to hear anything but "Fine." But if I don't tell them the truth about how I'm feeling, they still get annoyed and hurt, so it's like walking on a tightrope.

3) Unwilling to discuss or acknowledge Lyme.

These are the ones who tell me that I just need to get out of the house more. Nevermind that my doc has cautioned me against driving, and I can't even trust my hands to hold onto my 2 year old's hand while we cross the street.

4) And finally, I have one family member who is wildly afraid that I'm contagious, and may infect her by giving her a hug. She's a teenager - but wants to be a doctor! Gotta laugh at that one.

Has your family reacted the same way?

Posted by bettyg (Member # 6147) on :

welcome to the club!

i went to my sibling's xmas this year; 1s time now in 3 years; hasn't changed any.

3 brothers don't ask how i'm doing, acknowledge how serious my lyme/etc. are.

1 bro. stated, "betty, you look like you';re struggling as i hobbled into his livingroom with my cane and 3 frozen ice packs.

yes, i am! proceded to tell them i now have heart problems. "betty, what don't you have">?

so i promptly said: cancer, parkinsons, als, ms/md.

"why don't you write me out a list of what you don't have"? end of dscussion.

so i just stay away from them; i hate the attitutde of "be nice to betty for 2-3 hours this afternoon, and ignore her the rest of the year"! [cussing]

Posted by lymedad (Member # 8074) on :

Cactus,

I'm a parent of a Lyme infected daughter. Our extended family falls pretty much in the same three categories as you have listed.

I've spent the previous 5+ years attempting to explain my daughter's absence from family gatherings and from other "expected" events.

Over this past 18 months, I've become quite intolerant with all of this type of problem.

I've made it known to all that if they don't like the fact that my daughter is too ill to attend the family functions, they can start expecting to not see me or my wife at any gathering my child chooses not to attend.

I will no longer attempt to explain her absence and I no longer tolerate any questions.

I'm pretty much fed-up with all of the nonsense, i.e., "she doesn't look sick", "she's just lazy", "let me talk to her, I can straighten her out", blah, blah, blah.

There's only three priorities in our life that have true meaning (certainly my opinion only):

1. Our relationship with God

2. Our relationship with our immediate family (son and daughter)

3. Our loyalty to our country

If anything or anyone attempts to come between us and these three priorities and they fail to see the seriousness of this insidious disease, I no longer have the energy or time to deal with them.

We've pretty much got everyone in our extended family squared-away and those that fail to get in-line, we've cut off from our world.

Life's not fair some times, but you do what you gotta do.

Okay that's my lecture for today. I doubt I've helped you in any way, but that's how we've handled the situation.

Posted by lymedad (Member # 8074) on :

Betty,

I'm sorry things didn't go well over the Christmas holidays.

I hope you've come to grips with the ignorance of some.

If their not contributing to your recovery, let 'em go.

Mental stress over this type of problem is not helping.

Posted by cactus (Member # 7347) on :

Thank you, Betty, and Lymedad, for sharing your experiences with me - it helps to hear that we're not alone in dealing with the lack of compassion or understanding from parts of our families.

Doesn't make it any easier to swallow, right now, but it helps.

Betty, wow, your brother sounds like he might be related to me, too - I'm surprised my sister didn't say those things!

My partner and I have made a game of creating responses for insensitive or ignorant comments and questions like that - at least it makes us laugh.

Lymedad, thank you for sharing your perspective on this, as a father - it's very healing to hear it. And it did help!

Posted by bettyg (Member # 6147) on :

lymedad, thanks for your support as usual; i totally agree.

i enjoyed your supportive comments to cactus as well.

cactus; see, we're all in the same boat but i'll swim ashore not drown or let them take me down with them! [group hug]

Posted by cactus (Member # 7347) on :

Betty, I'll be swimming right beside you!

Posted by panicbegone (Member # 10760) on :

i have all those type of people in my life.
sometimes i try to explain and they laugh or dont take it seriously..its amazing.

Some just think i should be able to function and stop being a hypochondriac.

Some understand but yet i feel guilty when im having a bad day cuz i know it must be mentally tiring to hear about my health, symptoms and lyme disease all the time.

I stopped trying to explain things to the ones that arent supportive. Save your energy and dont worry about their judgements. Thats all u can do.

I get most of my support here

Posted by pmerv (Member # 1504) on :

1. I think anger is sometimes a far more appropriate response than getting hurt;

2. People who aren't "blessed" with a chronic illness have much shallower lives;

3. I've met the most amazing people through Lyme.

4. Some people are jerks. Stay away from them if possible.

Posted by mlkeen (Member # 1260) on :

Yep, I got all kinds in my family too.

Now that my son and I are well, mostly only the #1 group is in our lives.

Some of the #2 group, who now have health issues and need special diets were greatful for my salt free cooking when we visited!

My sister, sent us lovely gourmet spagetti sauce for Christmas, last year it was a muffin cook book. Another relative gave us candy and hot chocolate mix. Are these folks listening at all?

Posted by trails (Member # 1620) on :

[shake]

This is so hard cactus. I have family and friends spread throughout your well said spectrum.

I dont have much advice, just empathy. Most of my family is in catagory #2 -- believing but thinking I should be well by now.

You know how much I have been through recently and even with a well understood and surgically caused issue (burned ureter during ovary removal--with subsequent 5 surgeries and still no end in site) STILL people give me crap about how I am feeling. They dont want to hear it. And this is not a matter of what you "believe" even.

It is hard for humans to stick with suffering and chronic illness. Some theories even say it is not "natural" to do so. In the animal kingdom there are many examples of how the injured are left behind or shunned. The sick are left to be eaten or die.

I dont mean to be harsh, but when I sense that someone is in stage #2 or #3 I cant help but think their instincts have turned on and they are trying to protect themselves. Thinking this way helps me NOT tackle them and strangle them. [Big Grin]

I also see it in our cats---they have been mean to the ones who come back from the vet sick and they are mean to me when I return home from surgery OBVIOSULY still ill. They hae only nursed young ones, not sick adults.

It makes me sad. I know you are hard working, loving and caring person--I would like to be part of your family.

[hi]

Something Melanie Reber said to me when I was sad about this still stays with me. "Family is who you end up thinking about at the end of the day." I really like that one and find it to be very true for me.

55515 cactus---you are a part of my family.

[Wink]

Posted by cactus (Member # 7347) on :

A huge, heartfelt thank you to all of you.

Trails, I love your theory about instincts... It fits. So - maybe the #1s are more highly evolved than the #2s and #3s!

And thank you, I'm very happy to be part of your family!

Ok... off to find the tissues, since I'm tearing up...