About 15 years ago on the cusp when I was getting progressively sick with lyme and co's, I ended up in the hospital for awhile. I didn't know it was lyme at the time.
After I got out of the hospital a few family friends sent cards, and a couple people enclosed a $20 or $50 bill since I had no insurance (nice thought, minimal impact of help).
Anyways. Fast forward to now; 15 years later. My now very elderly father is becoming more feeble so I'm helping him sell off some of his hobby collectibles.
One of those old acquaintances of Dad's has made contact with me, and asked in a manor that irks me, if I was the one sick those years ago. However, the manor he says it really just annoys me.
How do I politely tell him I have lyme, every day of my life since has been a struggle, and that $20 bill he put back in the get well card 15 years ago means nothing with tens of thousands racked up on lyme.
GRR, another aspect of dealing with Lyme and Babesia.
Below is his message. XXX = redacted info since this is a public forum....
-----------
Hey XXX,
Payment is in the mail to your Dad for the wood plane he should have it in a couple days.
Say, here was a fella a few years ago that had some health and financial trouble whom some of us got together and helped and got him on his feet again. Was that you?
Let me know, XXXX
Posted by Lymetoo (Member # 743) on :
Will you be mailing a response? .. or in person?
If mailing, just say ..
"I don't know if I am the one you are referring to or not. I've been ill for the past 15 years. It is a daily struggle just to keep my head above water.
Thank you for any help you [may have given] me 15 years ago."
Posted by randibear (Member # 11290) on :
yep.....
thank you for interest. regrettably, yes it was me, and I am still in recovery.
Posted by Keebler (Member # 12673) on :
- Absolutely, the amount might have felt like a slap considering the state of things. Yet, looking through a different window at this:
He / anyone who donated even five dollars, likely either did the best they could &/ or did what seemed appropriate and a measured response.
Likely, did not intend to cover even one medical bill (as most really have no clue of the degree here) or even a large chunk. It might have covered one prescription (at that time, anyway) or one nutritious days' food.
People are not going to understand the enormous - simply enormous - scope of this right up front, it takes time. They also think that a lot more folks will help yet that rarely happens. Or they think some agencies might step in and help.
I think, mostly, the scope of this is just not on anyone's radar.
And, for all we know, they might be in a similar circumstance with finances / debt even if they don't show an illness there can be other stresses they have. We can't know.
He remembers and he seems to have had good intentions and still does to wonder. The phrases above seem to be both informative / accurate and also non-judgmental.
As lyme / TBD often does, it requires us to be the "bigger" person because - well, we have information and scope that others just do not.
That really tests my patience as I think everyone should just learn more for crying out loud. Still . . . .
How you write a note, say what you might say can go a long way in expressing what anyone chipped in while also informing them of the complexity and chronic nature of lyme . . . and offer them a link to ILADS & LymeDisease.org so they might learn what is needed should they every need to know.
The links at LymeDisease.org are excellent for "citizen education" for their protection as well as to help show what those with lyme are going though. Unsurpassed, that site is.
and ILADS will help with the medical (word loss). Type those out neatly with the local / state groups and give to him.
This thread of information to them may say more than you could and they may also come around to help with local lyme support group in some way such as with errands, practical matters, etc.
Give everyone a way to learn more and many doors can be opened, even if it takes time or they are different doors from different avenues.
[ 10-01-2016, 04:27 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- Something like:
Thanks for thinking of me then, and even now as - yes - that was me. Unfortunately, since lyme disease & the other tick borne infections that go with it - well, it all just keeps clobbering every day.
However, with all I've learned about this, I'd sure not want anyone else to go through all this so here are a couple websites that can help you and your family - and even all your friends - if you share this information with them. The severity of damage might be prevented for many.
And, we all need help to get the laws changed so that medical care might be available for those who are so sick with lyme.
And, if you know of any who might like to become volunteers with our local lyme support group, it would be so appreciated so please do share these websites. There are so many ways for people to offer support to those who are homebound or incapacitated in various ways.
First, though, it's really important that this kind of information is known.
[ 10-01-2016, 04:54 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- The Michigan Lyme Association's website so creeped me out that I cannot even recommend you share that. I called them and left a msg. about the dozens of ticks "crawling" across the web page and the fast photos flying across the screen.
Could not stay on long enough to capture if they were ILADS "minded" or not.
It's not just the "creep out" issue, though, as when dozens of things of different size are all moving about in scattering fashion, no one can LOOK at the screen to find information.
If you have a local group, though, you might add that to your "information card" if you choose to share something like this:
Basic Lyme & Other Tick-Borne Disease Information & Prevention
ILADS - International Lyme & Tick Borne Diseases Society
About: Through Education, Awareness, and Action, ILADS promotes understanding of Lyme and its associated diseases and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.
The Lyme Disease Association (LDA), an organization which expanded its focus nationally 17 years ago, is dedicated to Lyme disease education, prevention, research funding, and patient support. -
[ 10-02-2016, 02:46 PM: Message edited by: Keebler ]
Posted by k84 (Member # 32738) on :
Thank you very much Keebler. I truly appreciate your time and efforts.
I generally when I can "pretend" to be normal to avoid really awkward social interactions with people.
Last time I tried describing Lyme (in person), the other party just was like, "so it's an infection, right? Just take a Zpack [insert judgmental look that I'm being a whining baby]".
Agreed on the Michigan Lyme Website. Well, it is being Halloween season. LOL I mentioned that awhile back to them, no response.
I wish there was more one could do, but sadly its fighting the system. For years I sat on the rural county Agricultural extension board. Very rural decaying farming area(I live 5 miles from town, its population 1,600 and is the county seat).
In the ag extension office is a nice poster showing Lyme and such in red in counties in Michigan and the danger to Dogs and livestock.
Local newspaper interviewed me, I was very careful of what I said, and two weeks later I get removed from the Ag board.
(breaking up the post for easier reading for many here)
[ 10-02-2016, 02:28 AM: Message edited by: Robin123 ]
Posted by Robin123 (Member # 9197) on :
In response to your first question, people generally have no idea what we're going through, so I like the responses the others here have suggested.
I try to respond in a matter-of-fact tone of voice, to give someone some info about what's going on, as in what the others have suggested saying. If someone's interested, then I'll go into it more.
Sometimes I go for it quickly - I immediately say it's a squiggly bacterial infection that gets into the brain and nervous system early on, as well as it can get into all tissues and inflame everything. If they're listening at all, that usually starts some sympathy.
I think they can't fathom having to go through life like we do, so their mind does anything to get out of realizing what we are going through.
I once had someone come to me who knew I was Lymed, saying they were newly infected and how did I manage to "do this," as in survive it. Those of us here have had very long unwanted training in how to do so.
That's too bad about the ag board, especially when you were being careful. The problem doesn't just go away because they don't want to look at it.
Posted by AndyR (Member # 46432) on :
Are you serious? I know it's frustrating that this man thinks you're doing fine, but just because you're chronically ill doesn't mean you can be angry at him for bringing it up.
What he did for you years ago was incredibly kind and more than most would have done in that situation. I've grown to learn that it's better to keep our struggles private majority of the time because nothing good comes of it by whining.
Just tell him that yes it was you that he helped back then and politely thank him for his generosity.