I have been chronically ill for the past 2 and a half years. It started as lyme disease, and when I didn’t get better, it became chronic lyme, until I discovered (2 years later) that I actually have a lyme co-infection called bartonella.
It’s hard for me to talk about it at this point. I get exhausted from having to explain it over and over. No, I don’t have lyme, I have bartonella. Who the hell has even heard of that, never mind what the symptoms are?
I have improved quite a bit, but I still struggle a lot. I feel self-conscious about the agony that I experience. So, I usually just push it aside and try to act fine. A lot of the time, I feel alone. It’s not necessarily a bad feeling, just more matter-of-fact. But, still, I wouldn’t mind feeling a little less alone, but how can I do that if I’m so hesitant to open up about it?
I decided to make a “wish list” as a way to express myself a bit more. It’s not a list of demands; it’s just a way for me to express my needs to the universe in the hopes that it may help me in my healing journey. Maybe there are even people who want to help me and are willing to read it.
Laura’s Wish List
- It’s okay to ask me how I’m feeling, but please understand that the answer might be brief. I’ve noticed that some people show concern by asking questions, but I get extremely exhausted by having to talk about it over and over. However, sometimes I would really like the opportunity to get things off my chest. If I say, “I’m not feeling well”, please feel free to ask me, “Do you want to talk about it?” if you feel you can hold a compassionate space for me. I may say “no”, but sometimes I’d really like a chance to just be heard without anyone offering advice, trying to “fix it” in anyway, or telling me stories about their cousin or co-worker who had lyme (which is not the same thing as bartonella, although it is common to have both at the same time). I just want someone to hear me.
- Please don’t give me suggestions or unsolicited advice unless you are a doctor who specializes in bartonella, or are suffering from/have suffered from bartonella. If you have an article about bartonella you would like to share with me, that would be welcome, but please refrain from asking, “Have you tried…?” Even if you think you know THE ABSOLUTE BEST CURE EVER, please just don’t tell me. I assure you, I am well versed in my illness. And to be honest, it just upsets me.
- If you invite me to do something, please try to keep in mind that I have physical limitations. I really hate having to turn down invitations (especially since I don’t get many) because I’m physically unable to do something. I may act fine, but I’m really not my old self, and I can’t do a lot of the things I love, such as going out dancing or going for long hikes (and I probably won’t be able to stay up late). Give me a couple of options like going out for a walk or meeting for lunch. That way I can choose based on how I am feeling rather than just having to say “no” flat out.
- Read something about bartonella. Google it. Spend at least 2 minutes learning about it, even if you’ve heard me talk about it before. Maybe that’s a lot to ask, but I get really, really tired having to explain it. Here are a couple of resources: 1) Bartonella Overview, 2) Bartonella, A Stealth Infecton, 3) Unravelling the Mystery of Bartonellosis
- Please call my illness by it’s name: bartonella. Bartonella is different from lyme disease, although you can get both from a tick bite. You can also get bartonella from other insect bites (such as fleas and mosquitoes), cat bites or scratches, and sometimes dog bites. About 25% of people are asymptomatic carriers, but the infection only becomes acute if the immune system is depressed.
- Do something kind for yourself every day. If there is one thing I’ve learned, it’s that self-care is so important. Please do something to take care of YOU.
- Be kind to others. We all have our own struggles, whether it’s illness (our own or a loved one’s), money woes, a stressful job, or any number of other things. If someone is grumpy, try to remember that they might just be struggling with something that you can’t see. It’s probably not personal.
Please don’t feel bad if you have done something on this list that I am requesting you not to do, or vice versa. I appreciate all the acts of kindness and concern that I have received over these past 2 and a half years. This is simply a way for me to be clearer about what would be helpful to me in this particular moment. I have no expectations. It’s just something that I needed to release so that I can continue healing. If you have read this, thank you for taking the time to hear it.