How to deal with Loss & Pain of Lyme Disease

Loss and pain comes in many ways. It could be a car crash, or a sudden illness, or a fire, or a bad investment. It could be a court case or a job loss. It could be a relationship that breaks up. It could be an abusive or traumatic experience.

For me, it was a relatively small financial blow that triggered a flare of late stage Lyme disease. I have had to fight chronic, migrating pain for as long as I can remember. For many years, doctors told me there was nothing wrong or that it was all in my head, caused by stress. I managed symptoms until I couldn’t anymore.

I was at the end of my rope. So, I tied a knot. I kept trying to get help. My husband brought me to an herbalist, who was sure I had Lyme. I found a doctor who tested and began treatment this spring. Treatment costs have eaten all of our savings. It’s been about $2,000.00/month and I have not been well enough to work.

This constitutes about a $40,000.00 reversal for us, between the out of pocket cost for treatment and the loss of income. A huge reversal over last year…

There have been invitations to speak that I’ve had to decline. There have been projects or events that I would love to have been able to be a part of, family and friends that I wish I had the energy for. Many of my days are spent going from bed to chair. On the pain scale of 0-10, most days are between 3 and 6 now. It was much worse in the early spring.

So, how does one deal with loss & pain?

• Maintain Perspective. I get so overwhelmed when I’m paying bills. I can feel the negative chemicals pouring through my body making me tense and nauseous. I work hard at talking my self through it with truthful phrases. It’s really important to point out the positive things in our lives, when we are going through hard stuff. Even if I cannot pay all the bills, I can pay some. I have hope of getting better and catching up. Our time on earth is short and everything changes. This too shall pass.
• Stir up hope. Listening to inspirational speeches when I can’t read has been super in stirring up hope for me. The Lyme is in my brain and causes severe headaches, vision and speech problems, as well as affecting concentration and assimilation. If you have been in similar circumstances, you know how isolating it can be. It may be looking at still art or going to the ocean or watching puppies and kittens play that would do it for you. Think of things that bring you hope for the future.
• Speak Life. Say what you want, not just what you have. When I was told that one of my meds was no longer covered by insurance and that I had to pay $2026.00 for the prior two weeks, I was crushed. I broke down. I was sobbing loudly. Between sobs, I quoted Scripture verses a word or two at a time. I…ahhhhh…shall live…hiiiih…and…haauau…not die. What a mess I was, for about an hour. I said that my God shall supply all of my needs according to His riches and glory. Within a couple hours, I was directed to a place where I could buy the same two weeks worth of meds for 18% of the cost.
• Communicate trust. In this year, I have had to explain to many people that I am not well and that I might not be reliable for a certain task or event. I had to trust them. They are my volunteers, my family and friends. I didn’t tell everyone everything, of course. We need to have purposeful concentric circles of trust around us. Maybe you don’t serve on a Board of Trustees for an organization, like I do. Maybe you have coworkers or church members or some other relationships that you have to let some people in on information about your huge reversal so you can still do life.
• Minimize loss. Stay connected to the people that matter. Make it a priority to visit with them as much as you are able. It has been so hard for me to choose what to do when I have a little energy. If I have had a blinding headache and get some reprieve, do I pay bills or play cards with my son? If you will default on something, contact the company and try to work on it, don’t just ignore it. Make the best decisions you can at the time and evaluate what, if anything can be done from time to time.
• Be gracious. Be forgiving, especially with yourself. Holding grief and anger produces bad chemicals in our bodies, that will perpetuate pain. Hope for the best from people, but keep expectations to a minimum.

I pray this has helped you to prepare your heart. It helped me to think about it. Do you have other suggestions? What other coping mechanisms do you have?