Maybe one of these phrases sounds familiar:
"My girlfriend is so abusive to me. She tells me I am lazy and that she hates me for becoming a 'burden' to her."
"Lyme is tearing my family a part."
"My husband doesn't even look at me anymore. When I try and talk to him, he leaves the room."
"All of my friends have abandoned me. I feel so alone."
"My parents tell me that I am crazy and I need to be in a mental hospital. I don't understand why no one will listen to me. I am really sick!"
I have heard these words spoken many times by those who are sick with Lyme and co-infections. When you are struggling through treatment with Lyme Disease, you need support, but oftentimes, you are mislabeled, misunderstood, and sometimes even abused by others.
The feeling of abandonment
To be honest, I'm surprised my marriage lasted through the worst of Lyme. I don't think anyone can prepare you for the toll that it takes on you and your family. As my health continued to fail, and the doctors could find no cause for my decline, I felt abandoned by those closest to me, who began to join the chorus of, "maybe this is all in your head." I suppose this would make sense if it had not hit me so suddenly, but I was desperately ill and knew that my body could not hold out much longer. Once I was diagnosed, many people who were on the outside could not see the day to day effects of Lyme. The truth is, people have unrealistic expectations about the length you are permitted to be sick. Partners grow weary of the unavailability of the other partner. Intimacy within the relationship takes a hard hit from this disease and leaves a wake of brokenness in its path. Both partners become broken, their children become broken, everything just feels broken.
I felt like I was no longer the same person. My once academic brain was reduced to something very child-like and I was completely dependent. I could not read or concentrate for long periods, watch TV, make food, take care of my children, listen to music or do anything else for that matter. I was weak, my heart was racing, and any noise made me cringe like a thousand fingernails screeching down a chalkboard. I felt alone, scared and unsure of my future.
The breakdown of support and building it up again
My husband was not initially supportive. In fact, he was angry, antagonistic, demanding and downright mean. He said things to me that to this day still sting my heart when I think back. But to be honest, we were struggling before my diagnosis. And Lyme can make you completely unavailable, irritable, and not much fun to be around. We now see that Lyme was a huge part of our problem even before the diagnosis. Once he became aware of the disease and learned more from my LLMD (Lyme Literate Medical Doctor), he softened and began to show support by learning as much as he could. This support was vital to my recovery and meant the world to me. We also sought counseling during this rough time. Today our marriage is not perfect, but we are in a good place. We are stronger as a couple. I often think about what it would be like if I had not improved. Would he still be here, supporting me? I don't know how long he could have waited for me to return to myself again. That question still lingers and makes my heart ache, but this is the reality of illness in our fast-paced, self-centered society. I want to believe that he would still be here and that we would still love each other through it all.
The real issue is a general,societal lack of compassion
This brings me to my biggest point. I don't think the lack of compassion is a problem that occurs only within the Lyme community. I think this lack of compassion is a societal problem that shows itself to the most vulnerable population. Personally, I was unaware of the ravages of Lyme and of many other debilitating diseases until I became sick. I was unaware of what someone goes through day to day when they are unable to take care of themselves. This vulnerability follows you around no matter where you are. You cannot escape the lack of compassion within our society today. I feel like I should have been more aware of this issue, but I wasn't and I did not learn it until I had to.
The need for advocacy
If you do not have an advocate (a family member or friend), finding one to fight for you is near impossible. There are services available, but they are limited and hard to find, especially if you are ill and having a difficult time just living day to day. You find yourself unable to make inquiries for services. As a society, what we need is a turn toward community and taking care of each other, but until this happens (I know, it seems unrealistic), but until this happens, there is not much hope for those left to fight this battle alone. And that just sucks!
What Can you do then?
You may be finding yourself in a similar situation. You are sick. You are not lazy or crazy. You cannot take care of yourself or your basic needs or the needs of others. To get well, you must focus on YOU. This doesn't mean that you are selfish and self-centered. You may not be able to do anything that looks like a contribution to your household, but know this and hear me: You are valuable because you are a person and your life has worth even if you are sick in bed all day every day. Believe it because it is true. If this disease has taught me anything it is compassion––compassion for others and compassion for myself. You need to be compassionate to yourself and Hold On! (a song I wrote for you)
So make the decision that you will not allow yourself to become abused or stressed beyond what your body can handle. This means that you may have to temporarily or permanently eliminate "toxic" people from your life if they are unwilling to be supportive and loving.
Maybe you are reading this and thinking, "but I have no where to go." If you are finding yourself in a situation where you cannot get better because of the environment that you are in, I don't have all of the answers, but I can offer some advice.
- Try to make a quiet and peaceful place where you are. If this means locking yourself in a room for a few hours to get the peace that you need, then do this. Find something that helps you find that place of rest in your soul. This may be in the form of music, listening to audiobooks, prayer and meditation, painting, singing, or just being quiet.
- I loved listening to and writing in my journal while listening to my favorite soothing music. Keeping a journal can also help you talk to someone (your journal) about your feelings, struggles, symptoms, and help you process what you are going through.
- Counseling. I found that visiting a counselor helped me make the right choices that were the best for me and my family. I personally chose a christian counselor because I liked the fact that she prayed for and with me before and after each session.
When my body crashed, I had no strength to do anything, so while my husband was at work, I would spend my days sitting outside under a blanket with the sun shining on my face. I did this for hours a day in the quiet. For some reason, hearing the wind through the trees––watching them sway back and forth––brought a calm. I listened to the birds singing, and the sounds of nature, and I would find peace––even temporarily. I spent hours just sitting in that place and listening––even on cloudy days that were kind of cold. I noticed that each day, my inner strength would grow. Even though my body was weak, my heart and soul were getting stronger. I tried not to focus on how I was feeling, but on what I wanted from life, how I wanted to live. I forgave myself for the hard things, for the failures and disappointments. This time was something that I did not have before I became sick. I was too busy to think about what mattered the most to me.
Lyme changed my life. My relationships have changed. I lost friends and close connections to some relatives, but at the same time, I gained an entire community of beautiful people like you reading this. A community of compassionate people, who just happen to be sick with Lyme. The relationships that lasted through the worst of it are better than they were before. Mostly because I realized that those relationship were more important to me than anything else.
Becca Brinkmann, PhD, writes about her experiences with Lyme disease and how she found hope through the storm of illness. She create hopetohealth.com to provide resources and information on lyme treatment and support. She recently published a book for her son with congenital Lyme, called My Wish. She lives with her family in Western Pennsylvania. Visit hopetohealth for more information. Subscribe to the blog below!