May 16, 2021

5 Things to Stop Saying to Someone with Lyme Disease.

It’s heartbreaking to watch my partner with Lyme disease suffer the internal war of what this disease does to his body, his life, and his relationships with the people he loves.

This month is Lyme Disease Awareness Month, and in honor of all of those who suffer from the devastating disease, I’m shedding light on some of the common hurtful things Lymies get bombarded with from people around them.

If you have someone in your life who has an autoimmune disease or is sick—I get it. Loving them is f*cking hard.

Being there for them is f*cking hard.

Trying to understand what they need is f*cking hard.

I’ve learned a thing or two in the last four years of being up close and personal with Lyme. All we can do as the support system is, well, support. One way to support: by spreading awareness and educating people on how they can show up more wholeheartedly for the people in their lives with an autoimmune disease.

Here are five things your love with Lyme is tired of hearing:

1. “You don’t look sick. You must be feeling so much better.”

This one earns the number one spot and has got to stop. I know it’s uncomfortable to talk to them about their struggle, and to be honest, sharing about your life without an autoimmune disease might feel wrong. But there’s a better way to show support and check in with them.

Understanding that just because they look fine on the outside, doesn’t mean there isn’t a crime scene going on on the inside. They fight with every breath to show up normal. Why? Because it puts us without the disease at ease. 

2. “I miss you; come see me!”

It’s not that they don’t want to pack up their car and come see you. In fact, all they want is to feel good so they can spend time with you. They have so much shame and guilt for not being “a good friend” while battling their autoimmune disease. Adding more stress and saying something like this pushes them even further away.

3. “I miss who you used to be when you were healthy.”

You want nothing more than to have them be healthy. To have them back to the way they were before this thing came into the picture. They do too. And they think about it a lot. About how life used to be before they got sick. They obsess over if they’ll ever beat this thing and go back to the way things were.

4. “How’s your Lymes?”
It might seem stupid that calling the disease lymes instead of lyme is triggering, but hear me out. This shows them you don’t do your part in trying to understand what their going through. You’re not putting in effort to understand what this thing is that’s running their life.

5. “Hey, have you tried ‘this’ new thing? I hear it helps Lyme.”

They spend hours, days, weeks, and years spending hundreds, thousands, and tens of thousands of dollars on the latest Lyme treatment. What works for one Lyme patient doesn’t work for another. The disease is f*cked up like that.

It disguises itself as so many other diseases that no one treatment can cure this thing. Chances are that the “new thing” you’ve heard heals Lyme, they’ve either already tried or heard of. Whatever they are currently doing to keep the symptoms at bay is a lot, and adding on the “new thing” will only add more stress.

Don’t worry if you’ve said any of these things. I have too.

Some days it’s really easy for me to love my partner and care for him with all I have. I genuinely feel God blessed me with being able to love him during this hard time. But other days are hard, and I lose my sh*t. We’re not perfect, and they don’t expect us to be. But actively working on showing up with more compassion and empathy is something we can do to love this person suffering from the inside out.

Here are five things to say instead:

1. “I’m sorry you’re suffering even though it doesn’t look like it. Is there anything I can do to help?”

Showing empathy and compassion goes a long way. They don’t look sick on the outside, and if we really could take a peek behind the curtain, we’d drop to our knees in sadness for them. So let’s do our best to support them however we can, even when it’s uncomfortable and hard.

2. “I miss you so much. I know you’re not feeling well and can’t come to see me as often as we’d both like. Whenever you’re feeling okay, can you let me know? I’d love to come see you.”

This approach takes them off the hook. If they can’t muster energy to answer your phone call, text, or come see you, this allows them to reach out on their terms. You’ll be surprised how this will shift the energy in the relationship.

3.I know it must be tough to not feel like yourself right now. But I love you for who you are, not who you used to be or who you think you’ll become. For who you are right now.”

Yes, they had more energy, more light, more everything “back then” and they aren’t the same person. But this thing inside them is taking over their body, and they are struggling to hold onto who they are. Encourage them by shifting your language and reminding them how wonderful they are regardless of their illness.

4. “I spent a few hours today reading an article about Lyme disease. I’m trying my best to understand it so I can understand what you’re going through.”

Show them you care by doing your research and actively trying to understand this disease. It’ll go a long way—trust me.

5. “I know you’re doing a lot of different remedies to heal, I heard of this new treatment—have you heard of it?” 

It’s totally okay for us as the loved one to be excited when we discover something that healed another person from Lyme. Because we want our loved one to heal too! This approach allows them to share if they’re open to it or not and if they’re open to talking about this new thing—putting the Lyme ball in their court versus us coming at them with a “teaching” mentality. We can show up, listen, and learn.

There’s a lot out there. A lot of resources, books, websites, remedies, and more for people suffering from Lyme. The fact that this disease isn’t recognized by our health care system is beyond me. I pray the more we all become aware, the more it’ll become recognized as an actual disease.

Search online and do research—it’s out there. If you’re overwhelmed with where to start, comment on this article and I’ll share with you some good places to start.

If you know someone with an autoimmune disease, show them you support them by shifting the way you approach their disease. Loving someone with the disease is uncomfortable and hard. But not as hard as having it.

We can do this.

We can be a support system for the people we love who are most suffering.


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