A few months ago, I was feeling very isolated in my diagnosis and treatment of chronic Lyme disease. I was desperate to connect with other people like me. Through a Google search and email correspondence, I swiftly became part of the Lyme alliance for my state. What a blessing it was to have a few people reply to my email and welcome me in.
My husband and I went to a Lyme disease support meeting for the first time last weekend. Before then, I had been too sick to make it to a meeting with symptoms intensified by IV treatments. I was excited to meet other people with Lyme, face to face. What would they look like?
Since I was going out (which I seldom do besides weekly church and for treatments twice a week), I decided to put myself together. I've developed my adult sense of style while browsing Pinterest on sick days and like to think of myself as a classic, comfortable, thrifty, closet fashionista. It was fun to throw a look together and feel like I looked nice, with a burgundy Art Deco printed tunic, dark wash skinny jeans, brown Oxford shoes, and a cream-colored blazer. I used my Saturday energy to do all this and basic hair and makeup. My sweetheart is classy and handsome always without even trying, and I'm always pleased to be beside him anywhere we go.
*wistful sigh* :)
Our (admittedly infrequent) dates have leaned heavily towards function instead of frivolity the past few years. Doctors offices, outpatient hospital visits, running a necessary errand...oh yeah, we're exciting. So off we went.
I was so glad my sweetheart wanted to go. <3
I have never been to group therapy, but walking in, it felt like that. There were a circle of chairs, "Hello, my name is" stickers, a sign in sheet, some cheerful posters on display, and fliers and bracelets for us in the Lyme initiative's bright green color. When people came late, every one of us moved our chairs back to let them into our collective circle.
The board of directors is made up of people with Lyme or caregivers of people with Lyme. The people who came for support were well enough to come that day, but we represented only a small percentage of those affected in our state. This is shocking, because I bet there were twenty of us. From feeling alone to being in a room with fellow sufferers that didn't come close to representing us ALL really surprised me.
After announcements and passing around articles that had recently been in the news about Lyme, we got started on the support part. There were about ten newbies, and it fell on me to go first.
I told my story. My husband whispered hints to help my Lyme brain piece the story together when I forgot things, but he insisted I do all the talking. As I talked, my gaze dashed between nodding heads, affirmative changes in posture, understanding eye rolls and sighs, clicks of the tongue, and heads shaking in disbelief and familiarity. I knew they totally understood me.
I finished telling my story early. It was unlike any time I have ever told my story because I got an entirely empathic and believing response. Several people asked me questions. I loved the openness. There were no apologies, well wishes, or advice (they knew these are often more discouraging than encouraging). It was like I was with people who had known me a long time.
I felt that that as soon as we started talking, we bonded as a group.
Certain familiar themes kept coming up as people talked around the circle:
-kids and spouses being affected emotionally and physically (with the actual passing on of the disease)
-putting so much money into treatment
-losing jobs or quitting, and coworkers believing it's all in the sufferer's head
-people judging, giving unkind advice, calling the sufferer a liar, or telling them to straighten up
-having the infection for decades without knowing it
-new infections with the tell-tale bullseye rash and the sudden shock of being unwell
-not knowing what to do next and thinking of giving up
-fearing for your life
-pressing forward anyway
Our symptoms were the same, but different. We each had our own fingerprint, so to speak, but the overall pattern of devastating fatigue, mental changes, and body symptoms recurred in each of us, I felt.
I looked at us. Professionals (some, fallen professionals who can't keep a job). Parents (some with young kids who are deeply affected). Young adults (who don't hang out with friends because they're too tired). Senior adults (some quick to laugh, some quick to balk). As nicely as we clean up, we aren't the same people we used to be.
We were all dressed up and looked put together because of hope. We portrayed wellness because our histories didn't set us up to know how to portray sickness. Some admitted to being fakers: we peeled ourselves out of bed to be to this one o'clock meeting, and we would rather be at home in pajamas. But we loved seeing a room full of others who understood and could help. And even if we always would suffer, now somebody else knew how we suffered.
One newbie in the group was an observer who has actually overcome Lyme. (!!!) She is attending support meetings around the country and may become the Susan Komen of Lyme disease! (Did you know that annually in the U.S., 200,000 people get breast cancer and 300,000 new cases of Lyme are reported? Yet people don't hear about it, have rallies and races and research funded. Shocking!) There needs to be more awareness and intervention. I hope this woman gets all she needs to spread awareness so more research can be done and insurance will acknowledge and assist paying for treatments.
Also, if the scientific community can get a new drug called Curza tested that obliterates biofilm-encrusted colonies of superbugs, we could theoretically have a cure in a few years. The medical community listens to the scientific community, and the pharmaceutical people listen to the medical community.
We gave each other insider tips and encouragement; some were more desperate for help in that way than others. Applicable advice can help. We are all in different stages of treating, grieving, and acceptance.
We finished the meeting by watching a screening of the Lyme documentary "Under our Skin: 2." It was informative. I had no idea Lyme was ALL OVER THE WORLD!!!
After that, I spent about a half hour with a woman who had been on the news earlier that week. She is part of the group and has a similar story to mine. I picked her brain about babies and Lyme (bless her, she lost a baby in utero due to Lyme). Our families are aging faster than we want them to. We connected over how baby hungry we are and that we are falling out from our peers who are still carrying diaper bags and have energy to do play dates and go to lunch. She said she does not have the emotional energy to keep up friendships very well, and that struck me because I don't either, but have never been able to articulate it so well. Before, I felt faulty for not having an ever-bubbling spring of emotional energy. What a relief to know I'm not the only one!
At the end, I appreciated what one of the board members conscientiously asked of us: "If you feel you are physically able, will you please help stack the chairs?" I was no hero and lusciously felt no pressure to help; I had just barely plopped down into a chair because I felt the blood drain from my head when I had crossed the room towards the door.
So that was our support group adventure. It could have been a two hour thing, but we made it into a four hour event. I was bushed.
My taller half was so glad we went; I was so glad he took me and that I didn't have to report to him what I learned. What a blessing he is to me. I love him so much.
I think the take-home messages I took from my experience at this meeting are:
1) I'm not alone. WE are not alone! Can I shout that from the rooftops?!
2) My sweetheart got to know other spouses and other people's stories, so he knows it's not just me, or him taking care of me. Being a caregiver is so difficult and isolating too; I'm glad he received support and validation in meeting others too.
3) Good things could be coming pharmaceutical-wise and awareness-wise.
4) I met new friends face to face who empathize with me.
5) I have access to an online support group forum now. We continued the conversation online. There is a feeling of love, support, and community. We are strong and powerful together, and we have each other's backs.
I look forward to more Lyme support meetings. In the spring, there will be a group party. Our kids can play with other kids whose mommies or daddies are glued to the couch too. Supportive family members can connect, and people with Lyme can interact and compare notes.
Support groups are helpful. You have to hear your stresses leave your body through words. To be accepted and validated like that was therapeutic.
What wonders. God hand-selects the people we meet. I am grateful for His help and wisdom. And I am also SO grateful for healthy, caring people who stick up for us.
No comments:
Post a Comment