posted
Hello. After having this situation for not quite 25 years, I have finally found a way out or at least a light at the end of the tunnel.
At this point, though, I am treated like a criminal not only with my family but also with family friends and people in the community.
People are suspicious, judgmental, negative, nasty and think the worst of me. How could someone be that sick for that long?
It is definitely a form of discrimination.
The pain is unbearable from being thought so poorly of when you have not done anything to hurt anyone.
You are a taker, lazy, a loser, immature, strange, have an emotional problem, etc...
I am an honest, hard-working, ambitious, loving person but most people do not see that.
I have never stolen anything in my life and I certainly do not lie.
I am strong enough to know myself but to be treated with such disdain from every angle day in and day out is insult to injury.
I take great strength in God. I would like counseling but am unable to afford at this time.
How do you cope with the discrimination when you still rely on the same people who are hurting you for basic necessities like food, shelter, etc...? Thank you for your time.
Posts: 121 | Registered: Sep 2007
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Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Walk in truth. That's the best we can do. And lower the barre with expecting others to understand. Those who are not interested in learning more will limit our relationships with them but we can't push them to learn.
We can only know that we walk in truth and are doing our best against staggering odds & medical criminal negligence.
Having watched "The Twilight Zone" in my youth, that now seems to have been the very educational for what was to lie ahead.
I also gain fortitude from learning the history of minority groups and their freedom movements. I see all the PBS shows & documentaries I can and marvel at how others were able to walk in truth.
We know the facts of our own case. We do the best we can. We are of value and wonder - even when that best can muster - does not turn out as we had hoped. And we keep hope that some day we can walk, not only in truth, but in health. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It also may be time to redraw your circle of friends and redefine your family circle. You can't just divorce family, however, you can make some practical changes in how you spend your time together, the boundaries & topics of conversation, etc.
Drop all expectations of others, although be around only those who will be respectful.
Remember that we cannot know WHY someone else may not want to learn more about lyme or ask what we are REALLY going through.
I just must assume - for my own spritual wellness - that they just can't. I try not to figure out the reason but just realize they cannot.
If moving foreward from there is not possible, I try to shift over a step or two and figure out if there is any degree of relationship that may be able to go from there. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I remember a time when I had no idea what people were talking about and just had no picture of what could be going on, so I substituted my own thoughts, of: they make no sense, I don't know what you're talking about, etc.
I'd say the best defense is to be educated about what's going on, and then say it. Counter their ignorance and teach them what this is. Make your voice insistent with the following, once you have the knowledge to do so:
I start simply and slowly, one question at a time, with its answer, like I'll ask someone,
"Do you know what Lyme disease is?" and wait for their answer.
"Have you ever heard of Lyme disease?" and wait for their answer. etc.
Reason I say wait for the answer, is because they're going to have an answer of some kind, and we need to respond to it.
It's like a flowchart - yes, no, well I...and then they give you some kind of answer. Respond to that, then return to your simple questions, like
Did you know that Lyme is a bacterial infection? That it's similar to the one that causes syphilis, that they're both spiral-shaped,
that the bacteria causing Lyme disease gets into the brain in 12-24 hours and starts the inflammation there,
that it's a total-body inflammatory process as it can mess with the body's regulation from the brain on down,
that it can corkscrew into tissues and inflame anywhere in the body, etc - these kinds of facts.
Re your relating their question of how you can be sick for so long, I would still answer with questions -
Did you know that the Lyme bacteria can change its shape and hide out in cyst form in the tissues?
Did you know it can change its outer surface proteins as well as change which ones are exposed to the immune system?
Did you know the immune system can become overwhelmed by this illness? Did you know that most doctors don't recognize what's going on and that we have to see knowledgeable Lyme-treating doctors?
And then I start on another track -
Do you know how Lyme is transmitted? Are you aware that it can be transmitted by ticks, other bugs, sometimes us?
Did you know that tiny ticks are in vegetation, on wood and on animals, and that they may be questing - that is, with two legs held out in the arm - to grab onto anything passing by?
Did you know that ticks don't care what they grab onto, but we do?!(that said for a little bit of humor)
Do you know how Lyme got its name? Do you know why? (reported from the area in the mid 1970s, spread out from there) Did you know it has spread all over the world by birds?
In other words, YOU take charge of the conversation. YOU direct it, with a lot of information,
best asked as questions, so you can hear where they're coming from, because they're only coming from where they're coming from, if you get my drift.
If someone answers, oh, I had a friend with it, they took a little antibiotics and they're better,
I respond, Great, good to hear it, they were the lucky one, most of us are not so lucky, because did you know (and then start the questioning again)
That you can only best treat it at the beginning? Did you know that most people never see the tick that bit them, and that they go chronic?
May I say, I think after having studied the facts on the situation, so I know what's going on, and know what to say,
that I can intervene in most people's conversation now, and get them to start asking me their questions, because I get through and they start to get curious.
The best show-stopper of all: Did you know that any of us can get Lyme and co-infections? Did you know you can get it in your front and backyard, in a park, sitting down on an outside wooden bench?
Did you know it's a matter of statistics - that a certain percentage of ticks in any area are infected with Lyme and co-infections?
Did you know that ticks can carry co-infections too, like babesia, bartonella, ehrlichia, etc? Do you know what those infections do?
Do you know how to protect yourself? Your pets? Your environment? I know those answers - about tick repellents, and protective measures. You need to be able to tell people how to protect once you get them worried.
I'd say if you know the facts, you're ready to get started with interventions, but if you don't, I suggest that you read first about what's going on.
By the way, it doesn't work to attack people, because they think they're right. And until they have any facts or a picture of what's going on, that is all they know.
I aim to get into a factual conversation. I also expect to hear their answers and respond to what they're saying, before I return the conversation back to the facts.
There comes a point in a conversation like this, when people start to get it, and then they express their feelings, like they miss you being well, or being able to participate, etc.
And I acknowledge those feelings - I say, me too - and in that way, you start to create more of a sympathetic bond as you hear their feelings and acknowledge them.
As we do that, they are more likely to hear some of ours, and sometimes, I'm in complete agreement with friends and family -
I too wish I could do more and be healthier again, and I say, patience, I'm working on it, and in the meantime, I'll do what I can, and I want you to know that I care too -
Answers like that. It is possible to turn these conversations and relationships round.
And when I ma able to get them curious and they're asking for some more info, I can hand them a Lyme brochure, I can tell them to watch Under Our Skin at Netflix or www.hulu.com, etc. Be ready to guide them to some further info.
One last thing - don't expect people who held long-entrenched views to suddenly turn around and be your best friend. I have found it takes a little time for them to absorb what I'm saying, what we've talked about.
And there may be more to discuss, and handle that with facts too. Just keep guiding them to what's going on. And for all that, WE need to have those facts ready to go.
Posts: 13116 | From San Francisco | Registered: May 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i gave up doing what robin does. im not saying its wrong...but it wore me out.
j-dog...i know exactly what you mean...i have been at this 30 yrs now...
the people i have helped have asked for help...ive lost friends and family by trying to educate them
i just fake it as best i can and practice letting how others criticize roll off my back. i let myself be validated when an llmd or a good doc or a test result shows i really am sick.
i know there are separate studues that show lyme fatigue is worse than conjestive heart failure fatigue and lyme pain is worse than cancer pain...
i dont know where those studies are but they have been talked about at conferences and i think on here.
its not in your head...spiritually i have to believe this is happening to me for a reason...to get me stronger...to help others ...to learn humility...i dont know. but i dont believe it is just punishment. and i know it is really.,really hard to do.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Thank you so much for all your wonderful advice. I felt better and had more control over how to deal with this situation immediately. Sometimes we just forget what tools we have in our toolbox.
Posts: 121 | Registered: Sep 2007
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