As Lyme Disease Awareness month gets under way, I see thousands of posts a day trying to spread awareness. This has been hugely helpful because I can see what works and what does not. Hint: its not the loudest ones making an impact.
Everyone has their style but is being loud and in your face about information something that draws people? Usually no. To draw people to you, you have to build a human connection, give them something to relate to. While all Lyme Disease awareness is great, if we are tactful we can make a bigger impact.
What drew you into a community you are part of? Think about how you would want new, scary information presented to you. Most awareness for medical conditions is only achieved by ones close to those sick learning more and advocating. Screaming that this disease is deadly and omnipresent, while true, is scary and sends people running.
I think about who cares most about me and didn’t know me first. Our first conversations were about who I am, my hobbies (even if they are on hold), my passions, not about Lyme. I slowly let them in about the seriousness of the disease. With the time they took to get to know me, not just my illness, built a stronger connection and therefore more empathy. Empathy is far stronger than fear.
So to all the amazing advocates out there, I urge you to strengthen your message. Try to look from the outside in. We have created an amazing Lyme community. Now it is time to reach out to those who care about our condition and not to scare them but to bring them to our team to end the epidemic.
Social media is all about highlighting the moments of your life that are working. However, I still want to be honest and show that Lyme Disease is a awful disease. I’m very frequently torn between putting on a good face and showing how frustrating it actually is. This week has been the hardest ones for a bit now and what is posted is a happy photo.
First I caught a cold that I tried to muscle through, then I started herxing from my cold remedies, and thats when things got ugly. I woke up in one of those anxiety binds where your brain tells you that sitting up or moving 2inches will be the death of you. Most of the morning I spent in ball, only to get up for detoxers. The grip slowly wore off until I remembered an errand that could not be put off and I wound back up. My boyfriend got me through my errand, an issue that would have been a mini disaster without his help so when he ordered pizza later I offered to get it since I didn’t feel like my chest was being slowly crushed anymore.
At the pizza place, they are rude, they don’t have his order, then they do, then they make me wait. As I paced the foyer, I started winding back into my anxiety ball. After 15 minutes I left with the pizza, which I would find out later was the wrong order. I got in the car and cried till I got home because I was so tired of every second of this day being so hard. I had very little control over how I felt, which is one of the things I find hardest to accept about Lyme. I never had anxiety before. I don’t have anxiety. I have Lyme which gives me anxiety.
Another layer of this frustration is that I believed when I finished my antibiotics from Jemsek, I should be mostly better. Ending antibiotics and switching to herbs has proved to me that this is far from the truth. My herxing has been hugely neurological, telling me that the antibiotics did a really poor job getting the bacteria out of my brain. I’m excited to get home for Christmas because there awaits a new stress herbal blend from my favorite herb master. I have high hopes that this will be a tool I can use to fully suppress the unnecessary anxiety. If it wasn’t for the set of herbs I already had in hand today, I would have probably never left my bed.
I went through a fairly miserable day and there is no record of it till now because I don’t know how you show that and still want to be someone others spend time with. 95% of my pre-Lyme friends are gone. My Lyme friends suffer with the same issues and worse so there’s no reason to complain to them. They get it. Drawing the line between honesty and presenting the person you want to be is an issue that I struggled with before Lyme and even more now. No one could air all of their issues all the time or else they would have no friends but where do you cross into faking it?
Sorry for the lack of consistent good blogging. Its been a crazy few weeks for me and its just getting started.
I was going strong today till a herx snuck up on me and knocked me out. I took a few hours off to watch Ink Masters and detox. This was probably best because I leave for Pennsylvania tomorrow for a 36hr trip that I haven’t packed for. I will be doing my initial consult with a new Lyme doctor that I have high expectations for. For anyone following my medical saga, I will be continuing long term antibiotics with Dr. J but adding a new protocol on to that and my small assortment of herbals. I will update more details when I learn them Friday.
I have made some pretty big improvements recently. I’ve been able to stay out for most of the day sometimes with the photo shoot and then rested without huge repercussions. My herxes now seem to come on in intense short spans rather than the long miserable ones. I think this is better? I’m happy to report only one illogical emotional breakdown from symptoms this month so far. With Bartonella treatment coming up, I’m not sure that will hold though.
I am extremely hopefully that with new treatment, soon I will be able to drive myself again and re-claim some independence. For anyone dealing with Lyme, I don’t have to explain how huge this will be.
Till then, thank you so much to everyone who buys Beautycounter from me and buys LW products. Beautycounter sales allow me to get treatment and LW purchases allow me to create and fund larger and larger campaigns to further change. I feel like both are on the verge of some great things. ❤