Having Chronic Lyme Disease is challenging, the physical and mental symptoms we deal with, the financial burden it brings, the disruptive nature of having an illness, etc. However, as a united group of Lyme fighters are still people. We still have thoughts, feelings and hearts. I hope that I can shed some light on the beauty that Lymies are in this post.
I knew that I wouldn’t be able to bring justice to the three questions I wanted to write about, so I decided to recruit some help. I asked the Lyme community on Facebook, and here are some of the answers I received. The questions are complex, and definitely required some delicate thought, and I hope that I can inspire some of you to help me spread awareness about Lyme in a way that’s not just what symptoms Lyme victims experience, but about what Chronic Lyme involves, what we think about, and common reactions to Lyme – and in most cases, many people have no clue what this disease entails.
Question #1 – What are some of the most common things people say or do when they hear you have Chronic Lyme Disease?
Lyme warrior Rachel Fine says, “When people hear that I have chronic Lyme disease the reaction is confusion and disbelief, for example, they say, ‘what? Really?’ They don’t really know what it means to have Lyme.”
Lyme warrior Olivia Gomez says, “Most people either don’t know what to say or they say, ‘that sucks.’ I don’t really get much of a response. Occasionally I’ll come across someone who genuinely is nice enough to care, or someone who has Lyme themselves (it’s really common in my area) and we are able to have a pretty in-depth conversation about it.”
Lyme warrior Brooke Goodgame responds with a similar response. She says, “They usually don’t know what to say. Almost every time though, they say something like ‘my friend’s sister has that,’ or, ‘my cousin has that.'” She continues explaining how it might be nice to hear an affirmative response such as, “Wow, you must be going through a lot.” She asks that outsiders show interest, ask intelligent questions about Lyme, and maybe even display some empathy towards her battle.
Question #2 – Daily thoughts – what do you think about when you wake up, when you’re in pain, when you’re in public, etc?
Some of the things that Rachel thinks of when she wakes up include: “What do I want for breakfast? How are my friends doing today? What is something I could make, do, or walk to so I’m not just sitting inside all day?” She says, when she’s at her worst, she thinks, “I can’t do this anymore. I’m dying.” When she’s in public, she says it can be total sensory overload, so thinks about ways to try to get through it. Those thoughts include, “I need to leave right now. This is too hard”
Normally, when Olivia wakes up, she’s significantly fatigued, so her first thought is, “when I can get back into my bed?” or “when can I take a nap next?” She often thinks about how she’ll survive when she’s so fatigued. When she’s in pain, she usually thinks about how everyone else gets to live a normal life and why she has to struggle so much just to get through the day. She says, “I think about how everyone else is going off to college next year and I’ll be here trying to make myself healthy enough to go away, too.” She thinks about how much work it is to accomplish the simple things everyday that healthy people take for granted.
Brooke wakes up and thinks about many different things, but some of the thoughts that arise right away include how grateful she is that her condition isn’t worse, she hopes that others don’t have to go through what she’s going through. She tells herself, “I am suffering from symptoms of Lyme and battling this disease.” She thinks positively and thinks about putting Lyme into remission. Brooke says, “Before I was diagnosed, I just thought that I wasn’t an active person. Now, I’m so glad that I know that my hurting joints, and struggle to walk up the stairs isn’t just in my head, but it’s real.” She says that she doesn’t want to complain, but sometimes she wants to explain why she can’t and won’t do the simple tasks like chores. Brooke says, “It’s really hard to explain the pain without sounding wimpy.”
Question #3 – What are some goals you hope to achieve now, in the next month, and in the next 5 years?
Rachel’s current goals include: take care of my body. Keep it as happy and healthy as possible. Here goals for next month include: walk. Swim. Rest and hydrate. Try to get additional conditions diagnosed. Her goals for 5 years from now include: Have Lyme in remission. Manage anxiety. Have a service dog.
Olivia says, “Now I am focusing on graduating high school. In 6 months I hope to make myself healthy enough to go away to college for either the spring 2018 or fall 2018 semester.” Her goals for the next 5 years include: getting her bachelors in nutrition, opening up her own detox spa with all of the tools and treatments that I used to get herself healthier and stronger. She continues to explain that she also wants to get certified in Reiki and other treatments of the like. When asked why, she said, “so I can do them myself and help treat people who were struggling like I am, or hopefully at that point was.”
Brooke hopes to raise awareness about all the other effective, alternative treatments for Lyme. She says, “There are so many amazing remedies and ways to handle the disease that many people don’t know about.” She continues to explain that she’d love to be a children’s therapist, due to her personal experience with some difficult family stuff. With a positive attitude, Brooke adds, “Though it can feel awful, I’m believing God will use all of this suffering for good!”
For someone with Lyme, thinking about things like this can be quite difficult. Concentration is required, and for many, that’s a challenging thing to find. I have thought a lot about these questions myself, and I’ve discovered that these questions are questions that many people who do not have Lyme find interesting. People want to know more than just the physical symptoms that Lyme causes. People are interested, they just don’t always know how to ask questions without being insensitive.
You’re probably wondering if I’ll answer those questions above. I will, just not in this post. Stay tuned for my responses. I wanted to bring some light to some different voices, thoughts and opinions. Bringing awareness to this disease is a collaborative effort, and quite honestly, I don’t think any of us Lymies would be so positive if it weren’t for the uplifting community that we continue to build for each other.
Here’s to beautiful souls, Lyme warriors, strong humans, and determined fighters. This disease needs to be talked about, we deserve better treatment, we need more awareness, and most of all, we need to be acknowledged as real people who have futures and hearts.
“She is tossed by the waves, but does not sink.”