The Loneliness of Lyme

I lump my Lyme blog readers into three basic categories: 1) those who are curious; 2) those who are chronically ill; and 3) those who truly care and want to know. So, forgive me if you read anything shocking here or if you find a different Linnette than you're used to seeing. It's not that I'm two different people. It's that I've learned that most people don't really want to know, so I protect them from the reality of my debilitating disease as much as possible (and I've decided that this blog will be my dumping ground).

No. People want to see my smile. They want to take comfort in that I'm a strong and happy person. Nobody likes to deal with needy people, after all. They're too inconvenient. Too demanding. Too self-absorbed. Can't participate in the normal give and take of relationships.

Maybe the current administration has it correct. Maybe we should euthanize those who aren't healthy, those who burden rather than contribute to society. Put us all out of our misery and yours. Wouldn't that make life so much simpler for all? Then, healthy people can live happy lives, unencumbered by those who hold them back from living a full life.

I'll be the first to agree that euthanasia is murder. But, sometimes when you get to feeling desperate you have thoughts enter your brain that you would never otherwise consider in a million years.

Deitrich Bonhoeffer said, "We must learn to regard people less in light of what they do or omit to do, and more in the light of what they suffer." Now, here was a man who knew what it meant to suffer! This quote gives me a kinship with him that I have with few.

I realize I'm self-absorbed. I try not to be. But, how do you deal with being sick all the time and not become a little selfish? People sympathize with cancer patients, diabetic patients, heart disease patients - even mono patients and fibro patients are starting to become more understood. But, Lyme disease? An illness you can't see with your eyes? An illness that simply makes you look lazy and self-absorbed? An illness for which there is little proof or help or relief? No. Lyme disease leads to a very lonely life. Sick people fighting to live normal lives yet get knocked down because we don't appear to be trying hard enough - when in reality we're giving more of ourselves than anybody.

A friend asked me one time how I keep from shooting myself and my family (since they are ill with Lyme, too). He asked half in jest, but there was a glint of frank seriousness in his eyes. It threw me for a moment. I'm not used to people taking me seriously and being so sympathetic. My only answer to his question was and is God's grace.

So, what brought all this on? Weariness with it all. Tired of putting on a facade for a world that doesn't care anyway - even though that facade is more armor against emotional and psychological pain than anything else. But, the naked truth is I'm weary of the pain, the neurological symptoms, the weakness, the fatigue, the loneliness, the vulnerability, the having to say "I can't" or "I don't feel well enough" or "that would take too much out of me and make me ill." I'm tired of rejection over something I have no control over. I'm tired of the guilt that consumes me for not being the wife and mother and friend and hostess I'm supposed to be...that I want to be. But, there is no escaping. It's everpresent...a living hell.

8 comments:

Anonymous said...

I too am tired of the guilt of not being who I used to be. It's not easy facing people who think if I really tried hard enough I could be just fine. It can't be Lyme after all these years I'm told. Maybe depression. Well yes I am depressed. From being lonely and sick to death of trying to be who I used to be.

Andi

Linnette Rochelle said...

Andi, I SO get what you are saying! Sorry I'm just now seeing this comment. Please know that even when you feel you are alone, you really aren't. All us Lymies are out there suffering right along with you. God, too, is there for you. I don't know how I would go on sometimes without Him. Hugs! Take care and God bless.

Anonymous said...

I' don't want to offend anybody.
God. Which God? Christian God? Muslim God? Chinese God? I was a beliver. Now I see that me, I'm only a machine, biological machine, broken machine, different from animals but very similar.

I've lost my belives.

Anonymous said...

I realize I am late to this "party", but after 3 years of reading and researching Lyme on the internet, this is the first commentary that 1000% hits the nail on the head for me and my experiences. I felt a sense of relief in reading this and seeing my thoughts so well described. Thank you for that. God bless you!

Linnette Rochelle said...

Thanks for your input! Sorry it took so long to approve your comments. I just saw them today.

As to which God, there is only one true God and if I didn't have him I would not be with you today because even in my weakest moments he is the only thing that keeps me from taking my own life.

As to hitting it on the head 1000%, I'm so glad my post made you feel understood. Much of the time, that's all we really need - an understanding heart and mind.

(((Hugs)))

Anonymous said...

I was diagnoised with Lyme Disease at about age 37, I'm 52 years old now. I've have 2 cervical fusions, a lumbar fusion abd just had a total right knee replacement. This in the span of ten years. The degenerative arthritis is starting to really scares me. What next, what joint is going next. I've been off pain meds for the first time in years it feels great, more alive. I can sympathize with everyone out there who suffers from this disease. It's confounding and disturbing and we who suffer have to smile alot when we done feel like it and the "pretending" happens for the sake of our families. Pushing throught for them. Thanks for the moment. michele d God Bless because without my faith I don't know where I would be.

Anonymous said...

I told my Mom today finally. that we have to except the old Teresa is not coming back. I know she misses her and I do to. However with Lyme it is learning new way to live and I have to know that's who I am today. The struggles the pain the despair and yes the loneliness are all what I try to make of them. It can overcome all of me or I can do the best I can and that is to except and learn. Teresa

Linnette Rochelle said...

Teresa, thank you so much for visiting my blog. I hope it has given you some encouragement. I do have a Lyme Support page on Facebook if you'd like to be a part of it. You'll find it at: facebook.com/pages/Lyme-Support/313410885362828.

(((hugs)))

"Blessing" by Laura Story