posted
So I was talking with my sister today and she mentioned that my Grandmother has mentioned that she thinks I am dying. She says that I have been sick for too long and that she doesn't think I am going to make it!
How do you get through to people that just because I have been treating for a year and have been bed/house bound for 6 months and counting, that I am NOT dying!!
I'm having such a hard time right now. I have finally come to grips with the whole illness and am finally at peace about it, but NOBODY else is! With people thinking I am dying and all.
I don't know how to convey to people that I can pull out of this and I expect to. But in the mean time that I need support and love from them!
Does anybody else have people saying that you're dying???
Posts: 265 | From Oregon | Registered: Aug 2009
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posted
Maybe you could have them watch Under Our Skin? Did you know that most featured in the film have gotten better, but for all it was a long haul, as you well know.
I think it's still a matter of educating people about what's involved - it's a marathon, not a sprint.
Maybe that's a good example, since many things in life take time to accomplish - maybe you could think of activities they've been involved in that have taken them a long time to work on, and then say that Lyme is your mountain to climb.
And maybe explain what's going on, that you're dealing with the process of finding out what treatments will defeat an infection, that we detox, that we fortify.
And you have a great attitude!
Posts: 13171 | From San Francisco | Registered: May 2006
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
My husband gets approached by friends every now and then, who tell him they heard through the grapevine that I am dying.
It's kind of hurtful, in a way, because if all these people actually think I'm dying, they aren't doing one single thing to show any support, sympathy, concern, compassion or anything.
They just stay away.
And it makes me feel like my best (as a healthy person) just wasn't good enough. That before I got sick, who I was wasn't good enough to be worthy of being loved on if I were dying. I feel thrown out like a piece of old furniture.
I do know that if this illness turns for the worse, I will die with only the support of my husband, sister and daughter. Nobody else seems to want to be bothered. It hurts my feelings.
Posts: 1142 | From South | Registered: Dec 2010
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
In a way,not totally, "I" think we must be at peace with ourselves. We must have an inner peace with ourselves.
It is much like the greiving process and acceptance of who we are and what we are comes from deep inside.
Acceptance is the last stage of grief and coping.
We finnaly realize that NO ONE can know or further care as much as WE do.
It probably sounds like a terrible silly statement to those of us that isnt quite at that stage YET.
Anger, bargaining are all stages we MUST go thru,,,,what stage are you today???????
Peace be with you my friends!!!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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phyl6648
Frequent Contributor (1K+ posts)
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posted
I sure hope I am not but most of the days I feel like it.. After so many years and just now getting dx. I often wonder.
Posts: 1058 | From VA | Registered: Oct 2010
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posted
@just don- you are exactly right! And I have come to that place of acceptance, of having peace about it. This isn't to say that I like what is happening to my body, I just have peace about it.
But nobody else has that sense of peace with me. And it is so frustrating!!
Its like all the time that *I* was so worried and looking for support and for other people to worry with me, nobody believed that I was sick. Now that I have peace, it feels like they are all coming out of the woodwork and disrupting that peace.
And this peace is not to say that I don't worry about what if this really did kill me? I know it CAN, and I don't want to give people the wrong impression that it can't. I don't want them to give up on me yet though!!
I don't even know if I am making sense anymore.
Posts: 265 | From Oregon | Registered: Aug 2009
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posted
We live differently than well folks. They have no experience with this.
Just Don is right about inner acceptance. I saw what you're talking about early on in the fibro groups -
many were able to just accept where they were at and said EXACTLY the same thing as you are saying.
Only difference is, they/we didn't know what we were dealing with, so it was a hanging-on, hang-in-there experience.
We know now what we're dealing with, and so I still think it comes down to getting these folks more educated about the illness, how it works, how it's treated,
and you can assert yourself more to let them know, if you'd like. This is what's going on with me, and I'd like you to listen and talk with me about it.
And if they're not interested, then let it go and spend your time with people who are supportive.
Posts: 13171 | From San Francisco | Registered: May 2006
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by Robin123: We know now what we're dealing with, and so I still think it comes down to getting these folks more educated about the illness, how it works, how it's treated,
Other people really don't care.
Not until it involves them.
If they think someone is dying, they don't know what to say, and they just stay away.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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posted
Well, thankfully I have people who CARE! For instance, my Grandma. She cares so much about me. She is very supportive and all but she still thinks I am dying.
We live on opposite ends of the country so really trying to educate her is difficult. And she doesn't have internet. All of this makes it so hard to really educate people!
Another thing that makes education so hard is that is that it has taken me a year and a half to learn everything I know. And I have an incentive to learn about it.
Others don't have that incentive nor the hours each day to sit on the computer to read everything we do. It takes such a long time to really wrap your head around this disease.
I don't even know nearly everything there is to know, so how can I expect them to know much? I try to be considerate in remembering all this!
But yes, there are some people that really don't care to know or find out. That is sad. They are putting themselves in such a vulnerable position!!
Posts: 265 | From Oregon | Registered: Aug 2009
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posted
I wonder how many of us would be the ideal supportive person we want others to be. Not sure I have lived up to this ideal myself.
And in this country, maybe unlike the third world countries, we take treatment for granted, assume it will make us better. Have not a lot of experience with illness and discomfort. It might even be that illness is thought of as a sort of weakness in this environment. Might be better to talk about it less and attempt to look normal. Perhaps then people will not shy away and feel uncomfortable, not knowing what to do or say.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
@lou- you have a point, we likely wouldn't be much different than those around us had we not ourselves experienced this horrific disease.
However, I have taken the "act normal, look normal" approach for years. Guess where it got me? VERY very sick.
Since I tried my dead level best to be a normal person, even my Dr. (whom I worked for) didn't believe I was sick. And when I did crop up with obvious symptoms, i.e. hypertension, etc, she just treated the symptoms. She didn't dig to see why a random, seemingly "healthy" 16 year old had hypertension!
There also comes a point where you CAN'T pretend you are fine and normal! Even once I started treatment I kept up with the acting but when I crashed, it was so hard that people can't help but notice. I have no been bed/house bound for 6 months and counting. I can't pretend I am fine!
Also, when you do the whole acting thing, and you do crash, and it is obvious, people aren't likely to understand since you were seemingly healthy before.
Its just too complicated to do that whole acting thing. And besides, I am an honest and up front person. So I try to be real without complaining and letting it all "hang out".
Posts: 265 | From Oregon | Registered: Aug 2009
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posted
I wasn't really suggesting that you act. More like just not letting other people think of you only as a sick person. Apart from doctors. They need to know how sick you are.
Sending a hug. Sounds like you need one.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I think what we're going through makes no sense in terms how how they understand things.
So, maybe to keep it simple, make simple statements, pause between each one to let them respond as they wish, and respond to that.
For example: I am ill from a bacterial infection. It's inflaming my nerves and soft tissue. It interferes with my functioning. I am currently treating it. It can take awhile to treat, as it is a very complicated infection. I may not feel well while I am treating. Millions of people have gone through and are going through what I am going through. This is normal for this infection. Many improve from treatment. I hope to be one of them. In the meantime, I would appreciate your love and support as I go through this.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Sickntired, you are a "normal" person whatever that means. You just happen to have been afflicted with a TBD.
And "normal"? I've known a lot of "normal" aka "healthy" people during my lifetime. Let me tell ya, "normal" isn't "all that" as they say.
Forget all the labels. Just be who you are.
Being yourself and staying true to who you are is far more important than identifying yourself by a standard some "dictionary person" (new word!) has described.
I'd make it clear to your sis that you are not at all interested in negative feedback. I'd put her on the spot and ask her why she would even relay such negative info to you from your grandma.
And I'd get on the phone with grandma and give her an FYI--You are a fighter. You are a survivor.
Sis and granny need to cease and desist unless they're willing to offer you support in your efforts to get well. And if they opt to remain Debbie Downers, you need to temporarily suspend contact with them.
If they are just questioning but still supporting you, Robin's advice is very good.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Wow. I'm so sorry that you're dealing with what you're dealing with. That plain sucks.
Maybe some of the people around you are trying to distance themselves from the whole deal and that is their backwards way of "coping".
There are likely some in your life who have the ability, though maybe hidden right now, to be open to learning about this illness and to supporting you in a way that would be constructive. Those are the people I'd keep working on.
That said, there are some folks who simply never get it or want to, either out of their own fear, or feeling overwhelmed at not being able to understand what the heck is going on, or feeling helpless- all can be immobilizing. You have to fight for your own well being in every sense enough as it is, and those are the people one might choose to have play a different role in one's life.
Keep your chin up. I agree with others- you're definitely inspiring!
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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posted
I had to explain to my 7 year old son that mommy wasn't dying. He's a momma's boy and talks about me all the time. He had told this girl on the school bus about my lyme battle and she said to him "your Mom is going to dye!"
He was so upset it broke my heart. He knows more about lyme now I had to make sure the he knows that I am sick but I will get better.
-------------------- Without music, life would be a mistake. -- Nietzsche Posts: 48 | From Maine | Registered: Apr 2010
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posted
There are days I *feel* like I am going to die...but I hide it because of my kids.
Its interesting how people react to this illness. I use my facebook page to both keep people informed of how I am doing(if they even care) as well as spam them with everything Lyme Education I can.
Sadly, people do bail. Friends I really thought would be there...aren't. People who I would NOT have expected to be supportive, are, even if from afar. I think unless people are in your day-to-day life they simply can't understand the nature of this illness. Yes, we can have them watch the ovie, but memories fade...
Its not like someone with cancer, where offers of meals, help with housework, etc are offered. Nope, I don't get any of that. I am left to fend for myself, with my family.
I am determined to get well, and when I do I am going to create some sort of hospice-type group for people with Lyme...not to prepare them to die but to help them to survive until they are well.
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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posted
Thank you all for your ideas and support! I got the brilliant idea to start a blog for my friends and family and people who want to know about me and Lyme Disease but I don't really have contact with. So far people seem to be liking it, only 2 days into it though.
@brandilb- I think that can be the hardest thing for some people is reasuring their kids that everything will be ok in the end, but that it takes time, maybe a lot of time! And it is tough for kids to really grasp that too.
I think what is important for me to remember that I don't feel like I am dying. I really feel like I WILL pull out of this and God will be able to use me in a mighty way!!
@raw- If you ever really do that, please contact me!! I have formed this dream in the last year that when I am well, I want to help Lymie families for FREE! They don't have the money to pay but where you have a mother sick and maybe all the kids, etc, they NEED help!
I used to be a nanny and I loved it! The people I worked for loved me. Infact, the last lady I worked for has begged me back probably 5 or 6 times!!
Oh I have so many dreams for when I am well....how long until I get to fulfill them??
Posts: 265 | From Oregon | Registered: Aug 2009
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posted
I was dxd with ALS a year ago so everyone, including my doctors, just assumes I will die. No question about it.
I do get alot of sympathy but somehow it makes me feel worse. My progression is slow and I've had some progress with abx so I try to have hope.
I have to tell people I "just" have lyme so they don't get uncomfortable with my illness. I've set mini goals for myself: one more year until my son can drive and won't need me for that and then soon he'll be off to college. I hope to stay out of a wheelchair until then.
I've already told my husband I don't want a feeding tube or vent, I couldn't bear to be that helpless and dependent. I really don't think about my future much, I tend to be thankful for my good days now and remember happier times earlier in my life.
We all die sometime, whether we are old or young, sick or in an accident. After lyme, life is never going to be the same.
You will get better, keep at it, and when you do be sure to educate as many people as you can about lyme. You never know how many lives you will save.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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posted
@2young- Wow, that would be tough to have the ALS dx where everybody EXPECTS you to die. I'm sorry!
Yes, the sympathy only makes me feel worse too. All I want is love, understanding, and support. Not pitty!!!
That is a brave decision you made. I wouldn't want to be that dependent either! Once you are that dependent, you have no quality of life. And you are exactly right, we all die sometime!
When my friends start to freak out that this COULD kill me or they think it is, I tell them who cares, if it does then I make it to Heaven sooner than them!! This is not to say that I don't have a will to live or that I'm not fighting to regain my health!
Technology has put us in a tough spot when it comes to improving people's quality of life or not.
Posts: 265 | From Oregon | Registered: Aug 2009
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