Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
I am having such a hard time with family and friends that don't seem to understand how I could STILL be feeling so lousy and STILL have pain etc. They seem to think as so many do that a course of abx should do the trick and look at me as if they are disbelieving. Does anyone know of any literature that explains lyme in laymens terms and the difficulties associated with treating it etc that I could use to help explain? When I'm fee;ling this awful it makes it even harder to deal with those that seem to be questioning my diagnosis. Posts: 1750 | From United States | Registered: Dec 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Personally, I would not try to explain other than to say it is too taxing. Ask them to see everything here so they have a better idea what you are going through but also so they can't know how to prevent this for themselves and others.
When To Suspect Lyme Disease � by John D. Bleiweiss, M.D.
-- that article is not just for diagnostic purposes but also to explain how it's like for those with lyme - even during treatment.
It's one of the best articles I've seen that tells it like it is.
and it also comes to if you are getting the best treatment AND the best support supplements and and are in a healing environment with good nutrition, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Back to some dialogue, you say they question the diagnosis.
That is not their place. Don't allow the conversation to stray there.
You might keep this phrase handy:
"It's very complex"
(do not use the word "complicated" as that has a negative connotation that could deflect back to how they see you. "Complex" is a better term.)
and
"I have a page of basic links for you that can help answer your questions."
or
ask them to go to a lyme support group meeting with you (but only AFTER you've gone before to make sure all personalities will mesh).
You may also have to set aside relationships for the time being.
Maybe put on hold "I just don't have the energy and must put that toward my treatment and recovery efforts;
Others (like family) are more delicate but, still, you have to remain in calm control of how they treat you and honor your intelligence in this matter.
If you are living with your folks and they paying for any of this, that complicates things but, still, hold your dignity and limit the stress by not allowing conversations that may border on a person attack.
Your decisions are YOUR decisions. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- They may even want to see these threads. Lots of basic but key links here.
I would start with the film UNDER OUR SKIN. It's a must see. First. Before you even introduce other links. That link is in one of these sets:
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I think this is something we all deal with on one level or another. Even my wonderful husband doesnt really get it.
Every time someone asks my symptoms, and I begrudgingly tell them, they inevitably follow with "oh yeah, my knees aren't what they used to be either!", or "I forget things all the time too...just a part of getting older I guess!". It's infuriating.
Of course, you can't really understand what it's like to be sick all the time until you actually are, but it's still discouraging to be treated like a hypochondriac when it's so clear that there's something wrong. I think that this is the reason we all need so much support....because we deal with with so much doubt.
I agree that "Under Our Skin" is a great recommendation. But don't be surprised if they still don't get it. This is a different type of disease, and it's hard to really believe something you can't see. The fact that there's so much controversy doesn't help.
Good luck and try to not base your sense of well-being and level of pesonal determination on the feelings of others. When it comes right down to it we fight our battles alone. You don't need them to validate how you're feeling. If they can't relate, them dismiss their opinion like they're dismissing your feelings.
Posts: 63 | From Catskills, NY | Registered: Mar 2012
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I agree with the gang.... buy Under Our Skin and share it with your friends and family. It's a good start at opening the door to discussions on the truth of this disease. Very eye-opening.
Posts: 2238 | From East Coast | Registered: Jul 2010
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