Change isn’t always about being loud.

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.

Change isn’t always about being loud.

Why you have to be your own advocate when your doctor wont.

About one year ago before I was diagnosed with Lyme Disease I started going to therapy. The not knowing if I would ever not be sick was crippling so I sought help. A year later I’ve decided to stop therapy due to scheduling and other issues. In our last session today my therapist brought it up that if we had more time he would have liked to investigate if I was helpfully or unhelpfully distrustful of doctors.

I’m very proud of myself for not yelling at him. But I wanted to put it out there what I told him.
For 1 year and two months of the sickest time of my life, every doctor I saw gave me no help. No diagnosis, no definitive treatment, no hope. They either said you can see if this pill works, stress less, or some flat out told me to deal with it. I have the most common bacterial disease in the country and literally 40+ doctors were unconcerned and unable to help me. I would either constantly rotate through their office or if I spoke back about their lack of ability to treat they would fire me as a patient. Upon following up with all these doctors to tell them how they failed, not a single one has asked for more information. So when I say I distrust medical professionals its 100% based on experience in their lack of expertise and lack of ability to do their job.

Do I still see doctors? Of course.Do I follow their protocol? Defiantly. Do I ask questions, do my own research, and question treatment. You bet I do. In a medical world with so many issues, we have to fight for what is best for us.

One truly awful doctor at one of the most prestigious medical schools in the area said to me that I needed to learn to live with “whatever was wrong with me” and that there was nothing anyone could do to help. If I had listened to his advice I would probably have killed myself because I was unable to cope with how sick I was. Instead (after a large breakdown) I still pushed, called, and got into every doctor who would see me and eventually found the one who has helped me get my life back.

Being your own advocate is a Herculean task and chronic illness is not for the faint of heart. However it is never over until you give up.

Why you have to be your own advocate when your doctor wont.