About The Author: Rebecca is a chronic illness advocate living with Lyme Disease and Dysautonomia. You can follow her on instagram @dizzyallaround.
Learning How To Provide Support
Your friend, family member, or loved one was just recently diagnosed with Lyme Disease... now what? You might be feeling shocked, sad, angry, confused, or all of the above. You may want to help but not know where to start. As a fellow Lyme warrior, I wanted to share ways you can provide physical and emotional support to your loved one.
I was diagnosed with Chronic Lyme Disease and co-infections when I was 14 years old. At my worst, I was bed-bound and in a wheelchair. I had to use a bedpan to go to the bathroom and a shower chair if I wanted to wash up. I struggled mentally with severe hallucinations and suicidal thoughts that landed me in a psychiatric facility multiple times. I was able to reach remission but my body has lasting damage because my infection was discovered 5 years after the initial tick bite.
I’ve been a part of the Lyme community for about 10 years now. Over the years, I've spoken with many Lymies who have felt lonely and hurt as a result of the actions of those around them. Some friends and family may be ignorant or not know how to react.Here are some ways to be there for a friend or loved one who has Chronic Lyme Disease:
1. Stay informed on Lyme Disease
Not lymes. Or limes. Lyme Disease is an insect-borne infection caused by a bacterium known as Borrelia burgdorferi. It is multi-systemic, which means it affects nearly every organ system in the body. Chronic, neurological, and/or late-stage Lyme Disease is different from an early, new infection. When left untreated, it gets deeper into vital organs like the brain and heart. It becomes harder to treat and can cause permanent damage.
In order to try to understand what your loved one is experiencing, it’s important to understand the illness they are battling. Use credible resources when searching for information on Lyme Disease. WebMD and CDC scratch the surface, but if you are looking for more in-depth research and facts, check out organizations like ILADS.org and the Global Lyme Alliance. Online social media pages and blogs can also provide more personal stories from other Lyme patients.
2. Don’t forget about them
When I had Lyme, I was mostly bed-bound. I missed out on experiences with school, sports, work, and religion. I would lay in bed on Facebook watching everyone around me enjoy their life. My friends no longer included me in any of their outings. It seemed like I ceased to exist to them. Don’t assume that your friend can’t hang out, invite them anyway.
You could also try to accommodate them by picking easier activities. I had a friend who also had Lyme. We did easy activities like painting nails, watching movies, and baking. Your friend or loved one just wants to know you care about them. I promise you that the smallest gestures mean the world to us.
3. Be patient
Many of the symptoms of Lyme Disease, such as brain fog, memory loss, fatigue, and pain, can greatly impact our ability to function. We may cancel plans or forget important dates. I promise it’s not personal. The last thing we want is to feel guilty for being sick.
Lyme Disease can also have a huge impact on your mood. Depression and anxiety are often comorbid with the disease, which can cause people to feel agitated or shut down. I was a completely different person when my infection was active. I was constantly crying, paranoid, screaming… my mood was like a roller coaster. My friends and family were afraid of me, which made me feel even more alone and upset.
The longer I was sick, the more frustration I saw in my friends and family. I was constantly asked, “are you better yet?” The healing journey can last anywhere from a few months to several years. Some people may struggle for the rest of their life. It’s a very serious disease that is often chalked up to “a rash and muscle aches.” Please be patient with us, we are doing our best to heal.
4. Don’t offer (unsolicited) medical advice
We’ve heard it all. I promise you, your friend doesn’t want to be sick. They’ve dedicated all their time researching how to get better. They’ve probably been to more doctors than they can count. If they had a magic potion, they’d take it. I was told protein shakes, essential oils, yoga, crystals, religion, and “being more positive” would cure me. It was the opposite of helpful, it was stressful! Everyone wanted to put in their two sense.
Instead, ask how their journey is going. What has helped them? What didn’t work for them? As human beings, we naturally want to fix everything. We don’t want you to fix us, sometimes we just need an ear to listen when we express our frustrations.
It’s important to note that there are many different treatment approaches to Chronic Lyme Disease. Western medicine may involve antibiotics and antivirals. Homeopathic alternatives also exist like bee-venom, herbs, or various detox methods.
5. Show the way that YOU care
Everyone shows care and love differently. Whether it’s your time, gifts, or words, we appreciate it all! Offer to help them out with errands and chores around the house, or just do it! Sometimes we don’t like to admit we need help. We can often feel like we are a burden if we ask. We have had a lot of our independence stripped from us. There are times where we may be too tired to ask for help but we desperately need it.
If you are looking for more resources and support surrounding Lyme Disease, check out our other blogs:
- My Journey To A Lyme Diagnosis
- The Ultimate Lyme Disease Gift Guide
- Checklist of Lyme Disease Symptoms To Help You Learn More
What are some other ways to support a loved one with Lyme Disease? Let us know in the comments or share your story with us here. We love hearing from our community members!