tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
My heart is breaking and I know there is nothing I can do, but wanted to see if anyone has suggestions on how to undig the damage.
I'm sure many of us that have been fighting lyme for a long time, can often suspect when another may be suffering from it when they start listing all their symptoms and you hear the struggles they are dealing with.
I'm not the type of friend to sit with my mouth shut and say, "wow, that's too bad. I feel badly for you." I'm the type that if it COULD be lyme, I talk about my experiences and say they should seek a LLMD and my quote..."atleast get it ruled out".
As you can imagine, my record is 100 percent, in that I have never gotten anyone to a LLMD that didn't test positive, but the other side, is how to handle someone that trashes you for trying to help.
Basically, this is coming from a friend living in another state, so all done by email. But I've been hearing about all her various doctors, how horribly things are getting and all the crazy symptoms.
By the time she started talking about how this pain is moving from her lower back to her knee, them maybe the foot and then the breast and so on....I thought, I need to give her my imput.
Up til now, I had been hearing about all of her medical issues but never enough detail to jump out on that limb. But with her latest email, it looked too lyme like as she blamed menopause, a concussion, a heart problem, etc.
I tried to be very informative, gave her some LLMD names in her state, I gave her the support group link and number for her state, I even gave her the list of symptoms from the original email I had gotten from Betty when I first got here.
Well, she was FURIOUS. Told me that I need to stop thinking everyone has lyme and that I'm obsessed with it. She told me what each doctor has said and that this is why she's having this problem or that and since she has SOOOO many doctors now, they wouldn't ALL be wrong since they are all dealing with a different symptom.
She said she was writing me because she thought that I of all people would be understanding and compassionate to all she's going through and didn't need me turning on her like this. WHOA!
I didn't say she had lyme. I'm NOT a doctor. I just said I wish she would get it "ruled out" by an LLMD. I gave her the link to ILADS...I mean I really spent a lot of time trying to inform her but I came off as a kook.
But now I'm left with a heavy heart, and although I still feel STRONGLY she should get tested, I feel a need to put the kid gloves on and apologize. I'm in tears that I hurt her and even more upset that she turned so hard on me.
I have had people just ignore you...so I'm use to that. But attack? Wow...I wasn't prepared for that. I don't feel good myself and I just don't want anyone to get out of hand with this the way I did.
I wish sooo hard some friend had come to me when I was going from doctor to doctor to tell ME something like this, because I was so sick and confused, I was clueless. But I guess not all people want what I wish I could have had.
Soooo.....I know the best thing for my own health is to just shake it off, never talk lyme again and accept she needs to follow what ALL of her different specialists are telling her.
I know this put a strain up that will never be undone and I guess I'm just asking others when you know to keep your mouth shut and when you know you can help someone.
I have written back and apologized for hurting her and tried to leave it at....I understand that she has to follow the path she's on trying to get her medical answers, but if somewhere down the road, she hits a roadblock, I hope she will remember this.
Also, in her attacks, she said that IF she goes to her PCP, she will ask HIM to run the lyme test, so she totally ignored my extensive talk about a lyme specialist and heck, could be her brain fog.
I can't fault that...but I'm frustrated for trying to help which now has me in tears. I don't know what I can do for this friendship that I appear to have trashed in a matter of hours. So sad. Suggestions?
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
This sounds more like a defense than an attack- it sounds like she is going through a lot!!
It must be really scary for her right now and the doctors she sees I guess she has a lot of faith and trust in like we all used to with our old doctors- or many of us anyway-
I have become very diplomatic over time regarding Lyme treatment options and friends like those.
With one friend I hassled her for years and she finally got help and she is in full remission! I nagged her every time I saw her- and boy was I lucky she was CDC positive when she finally got tested!!!
MOST people I do not hassle, MOST people I do not barely mention Lyme to as a possible for THEM because it can ruin relationships.
What I do now is evaluate each person I think has Lyme and the likelihood they will take me seriously. If I approached EVRYONE I would be seen as a Lyme fanatic, so I choose my battles.
And then what I do is (okay this is sexist!) a long-practiced feminine wile handed down mother to daughter called, "Letting Him Think He Thought of It Himself" except it is gender neutral with Lyme.
Call it manipulation? Sure. Call it diplomacy!
When they say they have similar symptoms I will say, "Wow, I had that when I got Lymed!"
Repeat x 100 usually- and I NEVER EVER EVER suggest with most people that they have Lyme- just DON'T go there- because there are many Lymelike conditions0 and because it provokes a defensive repsonse- I just repeat OVER & OVER
"Wow, I had THAT when I got Lymed too!"
and sooner or later the person says, "HEY, do you think I COULD HAVE LYME?"
and I say, "ANYTHING is possible, hmm. They did a blood survey in CA and they found that one in 5 people had a TBD! SO it's cetainly possible!"
I have found that this indirect way works better. It keeps my social relationships from fraying too dramtically.
Yup, I heard all your friend said too, "You think everything is Lyme!"
(Of course I do, with REASON*)!
Just go easy on 'em, Tiger*)! Proud of you!! You came from love & concern!!! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
p.s. And if you are VERY VERY lucky she will be CDC positive!!! I was FLOORED when my friend I had hassled for years came back CDC positive from our local lab!!! DUMB LUCK! Lab is so bad-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
posted
I'm so sorry Cathy that you reached out with very good intentions and was attacked. The funny part is that as you were decribing her progression of pain symptoms...I thought to myself...wow, that's me to a tee!!!!!!!!!!! (and I am only 34, so it is not menopause here!)
I am actually going to be having a conversation with my dad about being tested for Lyme...he has had symptoms for years (and has always been an outdoorsman) and now I really believe that he too might have Lyme...I am not sure how it is going to go, but I love him, he is my dad, and I am worried.
Hopefully she will test positive from the "bad lab". Lets keep our fingers crossed. I think you did all you could do by apologizing. (even though you truely arent wrong)
If that doesnt seem to really work...tell her that you only suggested it because you care for her and you dont like to see her suffering and that you are worried about her. You dont want to see her in pain, so you were just giving another "suggestion" which may or may not be the answer, but was worth a shot.
Sorry this is so long... I dont know if it helps!
Hang in there!
Becky
Posts: 68 | From Massachusetts | Registered: Nov 2007
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Let her swim in her denial.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
As I wrote the original note here this morning, I was in tears and hoping someone could say SOMETHING that would make sense and give me some insight. I didn't expect anything amazing to be written, but wow!!!!!
First, I had an appointment today, but had read what you wrote Sarah, but didn't have time to respond. But while in the car, you gave me SOOOO much to think about. SERIOUSLY! You are very wise.
I love your angle of talking about how you can relate to someones symptoms or area of pain since I too had that with lyme. CLEVER CLEVER CLEVER!!!
So easy to do, but yet after a full year, I couldn't think of it on my own. What an eye opener. THANK YOU! I bet you save me from messing up like I just did ever again. Hard lesson to learn, but I guess not everyone wishes that someone had given the scoop the way I wish somone had done for me.
Also found your blood survey intersting. You mention 1 in 5 in Calif. That statistic wouldn't work for the east coast since they would say they haven't been to CA, but that's really HIGH. Where do these statistics come from. I mean I know it's epidemic, but that's BAD!
Becky, Thank you for your kind words. I do hope that things go smoothly as you "sway" your dad to get tested. Not everyone responds as this friend did, although sadly, I've had some pass me off as a kook but they didn't get ANGRY. Yikes.
Do keep us posted on how things go with your dad and good luck!!!!!!!
Treepatrol, Sadly, I think that's all I CAN do about now. "Denial is more than just a river in Egypt", huh? I guess I have this feeling that if I had to get this darn sick, it had to be for something....and the best I know is to try to protect others from what I went through.
But obviously, telling them to atleast get Lyme ruled out is too harsh. Sarah has me on the right path for anything I encounter in the future and sadly, I'm sure there will be others I encounter.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Cathy,
Dont be so hard on yourself.
YOU planted the seed,,now see if it grows .
Sometimes they just need time to get their head wrapped around something like this!! Then as their light bulb turns on,,,its look how smart I am now!!
this whole episode speaks of lyme rage to me as well as the denial part!! AND their thinking is as foggy as MOST of ours!!
You did good,,,you did about ALL you could have under the circumstances and their present feelings.
YOU didnt get anything wrong here,,,It just wasnt the right time and place,,,they NEED to sink a bit lower for them to figure out,,,hey ,something IS wrong with this picture!!
Leave it ride for a long time and see where else this leads,,,be supportive,,you KNOW you would like THAT!!!
You cant ever win a shouting match,,,never,,so ease it along and do as Sarah said!!! THEY have to decide before YOU can convince them!!(SOME people just need a bigger 2 X 4 tap alongside the head!!)
They WILL finnally see what all the ducks are doing to them!!! Smoke and mirrors remain JUST that!! from--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Cathy, you can only plant the seed. It's up to the person that is ill to follow up and get to a doctor that can help them. Hon, we know the real story and the truth about what this illness can do to peoples lives and health.
I completely relate to what you are saying. There are soooo many people that have crossed my path and I've told them some things about lyme & company. My sister and her earl 20's daughter, my niece, who I love dearly is one that I would bet my house on has lyme & company for the last 4 yrs.
My sister believes the GI specialist that she is negative for lyme. We can't just sit back and watch people go down the duck path without letting our personal feelings out.
We are obsessed. For a very good reason.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Cathy,
I have family members who have history of tick bites with diagnosis' like Post
Traumatic Parkinson's Disease. What a rot!
Of course they don't listen to my gentle urgings to get an Igenex test either.
I think (unfortunately) that more people walking around with all of these
Physical problems probably do have Lyme.
I am 14/15 for Lyme referrals and testing.
Not bad. I am just glad that none of these friends had to go through
What I did to get answers to my health issues.
That in itself is a "blessing" for both them and me.
You did bless your friend with your support and suggestions as well as links and info.
Not everybody is open to receiving sometimes.
I had to learn to be a good receiver. I learned that if I wasn't
A good receiver, then I was "cheating" someone else out of their blessing.
Pray for her. Pray that she finds the answers to her problems and that
She realizes that you were trying to help and not hurt.
In order to have a friend you have to be one.
I'd take you as a friend any day. You sound so giving and compassionate.
Sending you hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Again, you people are AMAZING!!!!! I'm sure you can tell that I have beat myself pretty hard over all this. I know I'm super sensitive to the whole topic of lyme and when someone you care about just seems so lyme like....I guess I do get obsessive about wanting them to catch it before it gets to where mine did.
Don, You are right. I definitely planted the seed, but didn't realize my seed would go rotten so fast. Yikes. I think you are very right. It wasn't the right time to bring it up.
She sent me a 'venting email' though and generally I honestly listen and try to understand, but this one just was almost text book lyme that I didn't know how to keep my mouth shut. Live and learn.
And yes, I will continue to be supportive if she can accept my apology and not come after me because as selfish as this sounds, I am too sick myself to fight a battle with lyme AND with her. I do think she's in a fog and feeling terribly sick, so deep down, I know I have to try to remember how I felt when I had no clue what was wrong with me. I was just trying to give her a head start, but she didn't want it.
But no...no shouting matches even slightly. Just not my style. Yelling gets you no where in life and I've never had that personality. I've been blessed not to get the "lyme rage" I hear other talk about. Knock on wood.
Pam, I guess you know first hand how frustrating this type of thing can be. Seriously, I do sometimes expect them to think I've lost my mind, but to lash out and get angry? It was an emotion I hadn't encountered before when trying to help. Guess some people don't like this kind of help. Thanks for talking to me about this and settling me down.
Geneal, Wow...another inspirational and thought provolking piece of advice. Impressive. I swear I just needed to vent and was emotionally a basketcase. Obviously the problem isn't fixed but you help me realize things often have so many angles and it sounds like you too have some major experience being in this position.
I really appreciate all of the insight. I have so much to learn and hey...I guess having lyme brings along emotional baggage I wasn't expecting. A good eye opener. THANK YOU ALL!!!!
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Cathy- glad anything I wrote helped- that statistic came from a study in account Pmervs neighborhood where they found a whopping 23% of a community had a TBD!!!!!!!!! That's one of 5 in my book*!)! Actually, it is very close to one of 4 people!!! (And 18% of that was Babs!)
It can be hard NOT to respond in email! Boy when I think of all the times I wish I hadn't! It is always best to wait a day before responding if I get upset- I know that from sad experience!!! Wish I always followed my own advice*)!!!
I hope tomorrow is more peaceful, And that you guys end up better friends than ever one day- Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
bettyg
Unregistered
posted
cathy,
just wrapping my arms and a wet, sloppy kiss on you!
you did the right thing; let it go; you can pat yourself on the back. everyone else has given excellent advise so i won't go there.
she's got anger FROM SOMETHING ELSE AND OTHER FOLKS; you were the unhappy recipient of her rage of othe stuff she is NOT dealing directly with those folks.
you're the type of friend i want/need! off to you my dear friend!
let her resume the emailing; don't be the first ... just let it all cool down.
i'm sorry your feelings go hurt and you can't let it go for your own health. YOU HAVE TO TAKE CARE OF YOU!
IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by tdtid:
Treepatrol, Sadly, I think that's all I CAN do about now. "Denial is more than just a river in Egypt", huh? I guess I have this feeling that if I had to get this darn sick, it had to be for something....and the best I know is to try to protect others from what I went through.
But obviously, telling them to atleast get Lyme ruled out is too harsh. Sarah has me on the right path for anything I encounter in the future and sadly, I'm sure there will be others I encounter.
Cathy
I feel the same way its hard when all your trying to do is help and it gets turned around in your face.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I don't know what your friend's diagnosis is. But imagine if somebody sent you an email about how you probably have fibromyalgia and really need to see a doctor who specializes in it.
You would probably react extremely angry. Maybe say things you would later regret.
Perhaps that is the type of reaction your friend had. She has probably learned to accept he illness and her diagnosis and is learning how to deal with it.
She probably spends so much time and energy explaining her illness to others, and thought you were questioning her.
I would respond that you were just sharing information because you wanted to help. That you were not questioning her illness, but you just were not sure if she knew about all the Lyme symptoms. That you are always there for her, no matter what her needs.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I SO feel for you.
I have a very close friend I'm convinced has lyme.
Classic signs.
Dx'd with possible lupus, tho negative ANA.
LONGstanding health issues. A good friend for a long time, who has stood by me thru thick and thin of ME being sick.
I have nagged her (finally) into IGeneX testing.
We await results.
I've given the standard lecture on meaning of the bands, and that her GP will be clueless. He refuses to give results to her so far since he hasn't "reviewed" them.
I coerced her into finally ordering the test by offering to come do family portrait session. Any positive or IND lyme-specific bands, she pays my portrait fees. If there are absolutely none, I eat the fees and shoot for free.
Yeah, I know it's a clinical diagnosis but I'm hopeful something'll show up if I'm right.
She's also shot full of steroids from multiple back injections; dunno how that will affect her tests.
Hope your friend comes to her senses and realizes you're coming from a place of caring about her and wanting her better.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
As usual...this place is the best. Thanks for the great insight. It's something I needed desperately.
Michelle, I had to laugh with your "deal" with your friend that if they test positive, they pay the sitting fee for a portrait. Only because I've talked to my husband about my temptation that when I'm this certain it's lyme, to make a similar deal.
If they test positive, they pay the Igenex bill. If they don't, I will pay. Just not sure I have the funds to be offering this to everyone I suspect in this world since as we know, the list is huge.
Again, thanks for helping me see this situation from so many different angles. Often we get so caught up in our tunnel vision, that we can't see outside that and you all have been great. THANK YOU!!!!!!
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Cathy,
I dont think you trashed the friendship, I think her reply and response to your email did. I think SHE overreacted. But since she felt offended, you are right, the only thing you can do is apologize and move forward.
But what are you to say from now on when she talks of her medical problems and issues? All you can do is hope she gets better and honestly? That would be my only response to her....
its a tough call.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
| IP: Logged |
pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
Sarah is wise! Good suggestion. It doesn't always work, like if the person has MS or Parkinson's and you don't. But maybe you could also use someone else who did. (I do have an acquaintance who has "Parkinson's-Lyme," another with "Lupus-Lyme" and another with MS-Lyme.)
Now when my oldest son complains of yet another FLI or sore back or whatever, I just say, "Gosh, that's too bad." He knows I'm thinking "Lyme" but damned if I'll say it to him after all his complaints that I think everything is Lyme!
I thank a nagging friend for finally getting me to go get tested. So nagging can pay off.
What people say to us reflects their own state of mind more than anything about US. Thinking of it that way may allow you to be more sympathetic to your friend. Just ignore the actual words and zoom in on their distress. That way you are thinking more about them than about yourself.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[Frown]](frown.gif)
![[kiss]](graemlins/kissing.gif)
cathy, ![[bonk]](graemlins/bonk.gif)
off to you my dear friend!
Printer-friendly view of this topic