They Will Never, Ever Understand Lyme Disease

by | Jun 24, 2008 | THRIVE! JOURNAL | 2 comments

learning to accept your family’s and friends’ emotional limitations

special guest

by Connie Strasheim


THEY WON’T UNDERSTAND. No matter how hard you try to explain the suffering that Lyme disease causes you and how much they attempt to empathize with your pain. Unless they have Lyme disease, too, they won’t get it. With your help, they may grasp certain aspects of your suffering better, but they’ll never be able to jump inside your skin and know what you are going through, and frankly, many won’t want to. Their problems keep them occupied and having to empathize with you or support you in any way may be asking too much.

Don’t bother talking yourself blue in the face, trying to justify to them why you can’t work. Why you can walk a mile but can’t go shopping. Why you need organic food at every meal, and why loud places, people and perfume are a big deal. Your loved ones have never seen an ill person look so darned healthy, and your behavior contradicts what a sick person is supposed to act like. Their idea of illness is a person with cancer, not you. It’s someone who is pale, has dark circles under his eyes and who can barely move. While that may describe you, you’ve also been known to go dancing from time to time, and how is it possible for a person to be sick and swing dance?

Even more baffling is your social behavior. Telling your family that Lyme disease has affected your memory won’t stop them from wondering why you can’t remember to turn off the stove and why you seem to pay no attention to the little details that they share with you about their lives. Your bouts of unexplained sadness will be a mystery to them. While they know it’s no fun to be sick, they will yet wonder why you can’t just pull yourself up by your bootstraps and be a little happier. They won’t comprehend why you always leave social gatherings early and why you can’t listen to their detailed, drawn-out stories as often as they’d like.

Not only will your family and friends not understand your symptoms and social problems, they also won’t grasp the financial hardship you endure because of Lyme disease. Those whom you expect to give you a few hundred bucks to help pay your rent won’t offer you a dime, and those whom you don’t expect to help you, just might do so. Also, your friends’ and family’s idea of hardship may be having no money in a retirement account, while yours is not being able to pay the electricity bill. They don’t know just how bad off you are, and if they do, they have never experienced such hardship themselves and therefore can’t have compassion upon you.

Let’s face it, the average human is confounded by the apparently paradoxical behavior and needs of the chronically ill. Only a person who has experienced your symptoms and suffered similar hardship will be able to grasp the nuances—or blatant inconsistencies—of your behavior and offer you compassion. But even those who have “been there” cannot empathize 100% of the time, because they forget what it’s like, and even they have limited capacity for pain and annoying symptoms.

What a shame that your family and friends can’t adequately support you during the most trying time of your life! Yet, it’s the sad reality for many and is the source of much pain and suffering for people with Lyme disease, but what’s sadder is that some Lyme disease sufferers allow it to be a reason for them not to heal. They become bitter and resentful, and it consumes them. They continue to expect things that their friends and family cannot offer, including financial support, en-couragement and understanding of their circumstances. Expectations keep them mired in illness and sadness.

It hurts to realize that people can’t be there for us, especially those whom we most expected would be there with us through our agony.

But here’s the rub. If we are to heal, then we have to let go of our expectations. We have to accept our loved ones and know that they are human, flawed and in pain, just like we are. Our suffering may be harder for them than we realize. They may want to alleviate our pain but are helpless to heal us, and that causes them anguish.

We need to focus on the good that others have given us. Recall the kind words our sisters and brothers have spoken to us, even if, in other moments, they have been cruel. Hold on to fond memories of our mothers’ encouraging us, even if at times, they have chastised us for our behavior. Remember the nice evenings out which our friends paid for, even if they forgot us when we really needed help with our bills. They did the best they could, and that they have been able to do anything kind at all shows that they care about us, even if their capacity to give has been limited by their humanity.

Trying to see your illness from their perspective is likewise beneficial. Imagine, for example, how frustrating it must be to have to repeat the same story six times because the person you are telling it to either can’t remember the details or wasn’t listening to you. How difficult it must be to live with a person who suffers from bouts of depression and Lyme rage, no matter that you know that their episodes are due to Lyme disease! How taxing it must be to wonder if you are going to have to support your five kids for the rest of your life without the help of your spouse, because he or she is ill.

In my theology, only God isn’t flawed. Only God can love us unconditionally. In the meantime, for the sake of your health, for the sake of learning how to give and receive love, let go of the idea that others should understand your suffering. They can’t. They never will, just as sure as we can never climb into another person’s soul and see their heart up close. It doesn’t mean that they don’t love you. They are simply human. Holding on to this realization and focusing on the good that they have given you, as well as the good that you can bring into their lives, will bring you great freedom and in turn, lighten your Lyme disease burden.

excerpted from: The Lyme Disease Survival Guide: Physical, Lifestyle and Emotional Strategies for Healing. Copyright 2008 by Connie Strasheim.

photo credits: Finding comfort © Aldo Murillo / iStockphoto

Connie StrasheimConnie Strasheim is an accomplished health care journalist and the author of The Lyme Disease Survival Guide: Physical, Lifestyle and Emotional Strategies for Healing. A Lyme disease sufferer, she maintains a blog on Lyme disease and other issues related to chronic illness called Lyme Bytes. Currently, she lives between Denver, Colorado and San Jose, Costa Rica.

  • Earthwalker

    Earthwalker is the username that PT founder Julie Genser created for her online interactions so many years ago when first creating Planet Thrive.

    Julie's (Earthwalker's) life was derailed over twenty years ago when she had a very large organic mercury exposure after she naively used a mouth thermometer to measure the temperature of just-boiled milk while making her very first pizza at home. The mercury instantly expanded into a gas form and exploded out the back of the thermometer right into her face. Unaware that mercury was the third most neurotoxic element on Earth, Julie had no idea she had just received a very high dose of a poisonous substance.

    A series of subsequent toxic exposures over the next few years -- to smoke from two fires (including 9/11), toxic mold, lyme disease, and chemical injuries -- caused catastrophic damage to her health. While figuring out how to survive day-to-day, and often minute-to-minute, she created Planet Thrive to help others avoid some of the misdiagnoses and struggles she had experienced.

    She has clawed her way over many health mountains to get to where she is today. She is excited to bring the latest iteration of Planet Thrive to the chronic illness community.

    In 2019, Julie published her very first cookbook e-book called Low Lectin Lunches (+ Dinners, Too!) after discovering how a low lectin, gluten free diet was helping manage her chronic fascia/muscle pain.


  1. Teresa Harris

    They understand, but they don’t want to deal with it. Doctors’ hands are actually tied. They are damned by the drug companies and insurance companies. Believe me, I’ve had to fight both. But I won. I have a wonderful Dr. As far as family….. NO they do not understand. They see you and the way you are at times, but I think they are in denial. I love my sister more than life itself, but she chooses to overlook it. You can tell when you mention LYME that it frustrates her. She is sick of hearing it. I just hope she and her family never get it. They find ticks on them but look at you like you are crazy when you tell them to get antibiotics.

  2. O

    I take offence to that. I do understand. I had to live trough it with my husband minute by horrible minute. I had to fight for him everywhere we went. I had to deal with all the put-downs from clueless doctors. I was on the receiving end of the multitude of symptoms for many years and yes, you do get tired, but you understand… The terrible thing kept coming back 3 times and we could not find a single doctor who understood and didn’t try to get him hooked on prescription drugs. There needs to be change!

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