Last night I made my first visit to the local lyme support group (
you can find information about the time and location of my group by searching for the word “lyme” on this page, but note that they don’t meet in Dec/Jan/Feb the one I visited is defunct, but a new one started, or find a support group in your area). I’m not sure why it took me so long. It took me months to find the group (I only found it thanks to the help of someone I met through my blog) and then a couple of months to be free on the night that they meet, but I think I was also apprehensive about going.
I’ve already joined a number of email lists (my favorites include Robynns_Lyme_List@yahoogroups.com (which sends out news articles on lyme disease) and <yourstate>Lyme@yahoogroups.com (this is an activist group so you should join the one that’s specific to your state). I also subscribe to the lyme disease research database news blog. There are also some online forums that don’t go straight to my inbox, and as a result I am terrible about visiting them.
So why the apprehension? I guess it’s the fact that every person I encounter seems to have a different solution, which can be overwhelming given my own uncertainty about what to do. And maybe the fact that the few people I encounter who have been cured can’t seem to explain how in a way I can use. And finally the depressing fact that so many people with lyme are facing so many difficulties, from doctors who won’t listen to them to insurance companies that won’t pay for their treatment, even assuming they know what treatment will help. If reading about people online was so depressing, how could meeting people in person be better? But after a month of feeling worse than ever, I was desperate to find people to talk to who could understand what I was going through. So I arranged for a babysitter, and headed out to the Etna support group.
I’m so glad I went. This month’s group included two women who had lyme years ago and were better, one person I know through the blog, and a mother and her two children (who both have lyme disease). The format was simple — we all told our stories (either the whole story or the last month depending on how new we were to the group) and everyone else listened and answered questions when they could. For example, I learned about a new doctor who could help with my mold exposure, and the group was able to put a name to my most recent symptom (“air hunger“) a search term which helped google answer many questions for me later that evening. It was a very late night for me, but it was worth the time and the impact of the late night.
My anxiety was not entirely misplaced. There is no question that the stories of the people around me were as complex, difficult, and frustrating as the stories I’d been reading in my email and in books. But there is a big difference between reading such a story in brief in a news article, and being able to talk to someone in person. I could ask questions. I could see the bravery and power of the people around me. Each of them was a warrior who had taken her health in her hands and fought for her rights. Some had already won, others were just starting, but instead of feeling depressed, I left the group feeling inspired.
I also left realizing (yet again) just how lucky I am. And it makes me even more angry about the situation that I and so many other patients face. I have many many resources at my disposal, from a (twice) positive western blot to excellent research skills, financial resources that allow me to visit many different doctors, an extremely supportive family and work environment, and friends who knew and recommended the doctors I am seeing. Despite all of this, it took a long time before I was diagnosed; I have often had to “prove” to a new physician that I have lyme disease; my first round of medication was stopped earlier than it should have been (or I would not still be positive now) and I struggled to find balanced information about my disease. I still struggle to find a treatment protocol that I can completely believe in. If, like many other patients with chronic lyme, my test results were less conclusive, my finances or work environment less secure, my family less supportive, or I had less information at my disposal, these problems would only multiply.
So as patients, we are engaged in a battle for our lives, as parents a battle for the lives of our children. If we fail, we are labeled with disabilities like Chronic Fatigue, MS and ALS and told to live with it. Our disability may progress, with the many obvious consequences. This not only hurts us, but also introduces costs to society (e.g. medical; taking someone out of the work force). This battle requires us to become activists; may require us to diagnose ourselves, select treatment options, and corral doctors. In a battle this serious, we’d be crazy not to join forces. We can give eachother strength, reassurance, and validation. We can share information and plans. So if you haven’t done so yet, find a support group or form one. You’re not alone.