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Lyme treatment choices: Do other people's perceptions matter?

Other people matter, this much is clear. We're social critters who need love and feedback from our peeps as much as we need food and water. But when it comes to our choice of Lyme treatment, can other people's opinions affect the way we perceive ourselves?

Look at a bottle of water, then look at a cup of water. The water conforms to the contours of each vessel. People, largely composed of water, are much the same. We tend to take the shape of the environment or community in which we find ourselves.

Other people's ideas of us have an impact on us. I don't mean to say that they control or dominate us (unless we let them). I mean their opinions and beliefs tend to influence how we perceive ourselves, and fit ourselves into our environment. The closer or more fully developed the relationship, the deeper can be the impact of their opinion of you, whether it is spoken or unsaid. We don't grow, develop, or heal (or become whole) in a vacuum.

Their feeling about a particular Lyme treatment may differ from ours. For example, imagine a scenario in which one person is eager to try treatment with an ILADS doctor, or begin alternative therapy, or an herbal protocol, yet her spouse has a low opinion of alternative medicine. He thinks she needs to stick with their IDSA doctor and go with conventional antibiotics. It may not be an easy decision to make.

We need feedback from people we feel close to, and we hope they support us. It's natural and necessary to seek support and emotional resonance. When someone in your life accepts and loves you unconditionally, hangnails, bad-math skills and all, you feel safe. Intimacy is psychological, physical, and emotional sanctuary, and healing can commence from that place.

Psychologists who study how personalities develop are currently revising their conclusions. The new thinking is that people's dispositions are not fixed, but more like a psychological language that can be picked up through immersion. Other people influence us.

When Lyme symptoms linger or come back long after the antibiotics are finished, the problems are more complicated. Social support systems, friends and family members, may be less available for the person who hasn't rallied quickly back to health.

Lymies do their best to fit in, be part of the norm, but chronic pain or exhaustion makes it difficult to be chipper, or even fulfill basic obligations. Even acting normal can tire out a person who is operating on insomnia and anxiety. Can you count the times you stuffed your pain and faked an answer to the perennial “how are you” with a glib, “fine thanks, you?” It's completely understandable. It can feel incredibly lonely and frustrating, like nobody wants to hear that you are still battling Lyme, especially when it seems that it never gets better.

And from the outside, understanding a chronically ill person's dilemma is not easy. A person with Lyme disease is in pain, and it's often invisible. One of the weird downsides is that people with Lyme often don't look sick. No one can see their bad headache, racing heart, or aching knees. “You look fine,” friends and family members will say. “You must be feeling better.” Beyond this, there is also a cultural undercurrent at work, the subtle shaming of a person who does not act chipper and perky, or at least look cheerful.

We all have many facets. Recognize that other people's vision of you – your uniqueness, depth, and your quirks – does have some impact on your vision of yourself. Others are, in a very real sense, mirrors to our growth and healing processes. This includes your doctor or medical team. So who is your support system, and what do they believe about your approach to healing? The only one who can influence a change in their opinion of you, is you. It's worth paying attention to.

New practice, new healing

Healing through cross-training
Surprises. Some are fabulous, whereas others we could live without. Before I was diagnosed with Lyme I never would have guessed that it could happen to me. Took me completely by surprise. But the nastiest blow was being told by the IDSA doctor, “Looks like MS. My advice is to apply for disability, get a wheelchair, and get ready to spend the rest of your life in it.”

Needless to say, I changed doctors, and was lucky enough to stumble upon a group of smart ones who had a clue about Lyme, and as much faith in me as I had in myself. I didn't get a wheelchair. I learned to walk, talk, and think straight again even through the pain. Over a period of years, I found ways to heal my body, mind and spirit through cross-training.

Time is a river
I thought about the element of surprise yesterday. A friend told me an anecdote about the way different cultures perceive the concept of time. Westerners and Easterners envision time differently. Both see time as a river.

However, in the West we imagine that events flow towards us from the horizon, approaching the present moment where we stand. In front of us, we see future events as they approach. When the event/time has past, it disappears behind, fading into memory.

Easterners imagine time's river approaching from behind. The future comes up from behind, like a surprise. It isn't visible until it's upon us. As events pass by, they flow away to the horizon, fading gradually from memory, appearing smaller and farther away as they go.

Lyme disease was like that for me. It attacked out of the blue, and engulfed my present moments for many years. But gratefully, as the time of being so sick has faded into the horizon, I see it from an increasingly distant perspective. And life continues to come up from behind and surprise me.

Starting a practice
I recently did something that I wanted to do when I was a teenager, at which time circumstances intervened, so I never got around to it. So it seemed a bit surprising, a little out-of-the-blue when recently I started taking Taekwondo lessons at a local studio. The present moment snuck up from behind once again. But this is no brutal blow like Lyme delivered. It's a nice surprise.

Starting a martial arts practice in my 50s – peri-menopause and post-Lyme. Ha, ha, right? Yes, I have stepped out of my comfort zone. And in spite of however it looks, I'm going for it. Even if I look silly, or have to push myself really hard. Even if I am really bad at it. Which I am. But I will stick with it, because it's fun, challenging, and has benefits for the brain (and god knows, I can use all the help I can get).

In fact, physical exercise is reported to be better for improving cognitive functions than even mental exercise. My brand of cross-training has always included an exercise component, but martial arts is well suited to my needs, because it's a body-mind-spirit practice. You have to find what works for you. When I was fighting Lyme at the acute stage, I couldn't even handle much walking, let alone do martial arts. For help regaining my balance, slower, meditative exercises such as Tai Chi and Qi Gong were well-suited.

Importance of community
The Taekwondo community my partner and I joined is a family-friendly place. Very supportive. Folks are each at their own stage of development. There are lots of women and children, and people of every age, from three-year-olds to at least one 70-something. Some have been at it for years, some are newbies. Everyone has something to teach or offer.

I practiced with a 5 year-old yesterday whose listening skills were, embarrassingly, better than mine. As instructed, he nonchalantly executed five perfect kicks in a row. Meantime, I lost track of count and lost my balance. Ten minutes later, I was mirroring an economics professor, a black belt. He helped me aim my roundhouse kick more precisely. Following that, I sparred with a woman ten inches taller and four years more experienced than me.

Astonishing turnaround
Another beginner, a 43 year-old pediatric endocrinologist (I know, it's a mouthful), told me she had decided to start training because of a patient of hers. He is a member of the community too. She saw him go through astonishing changes over the course of his seven years of practice. He is 18 now, and was diagnosed with diabetes at age six. He had been overweight and at times severely depressed. Last Saturday we watched him skillfully earn his first-degree adult black belt. Afterward, he read aloud a personal essay he'd written about his healing journey through martial arts. He's headed off to college, a dream that when he was child, he assumed would never come true.

But the future is full of surprises. Some surprises we will abhor. Others we appreciate. Perhaps in the end it equals out, I don't know.

Can you recall any good surprises in your life since Lyme? If you're not there yet, it's okay. Sometimes it helps to hear stories of courage and victory. Other times, not so much. It depends on where you are on your path. My wish for every person suffering from Lyme or any chronic illness is always this: Persevere. Find the right healing path, diet, medicine, and Lyme doctors for you. Find a community of people who will cheer you on, offer you a hand up when you lose your balance, and celebrate your victories when you succeed. The river of time is on your side.