My Experience with Lyme disease from the outside: by Samantha Rushovich
Having a chronic illness is something I cannot relate to. I don’t know what it’s like to wake up everyday feeling sick, hopeless, and afraid. I don’t know the frustration that comes along with not being able to do what you want to and need to do everyday. However, I know what it’s like to love someone with a chronic illness. My mom became very sick with Lyme disease when I was in high school. This was difficult for so many reasons, but especially since Lyme disease is so misunderstood. This is not the story of my mom’s experience, but of my experience living with and loving someone who is chronically ill.
To begin, I should explain my relationship with my mom. I was attached to her hip until I was a little too old. The comfort I feel around my mom is inexplicable and extraordinary. Just being in her presence makes me feel warm and safe to this day (I am now 19). My connection to my mom goes beyond a normal mother-daughter relationship though. I’ll express this with a story: Once when I was in the 8th grade I was sitting in music class. It was about 9 o’clock in the morning and I felt a random very painful throbbing in my ankle. It was out of nowhere and it persisted for about five minutes. I shrugged it off and went on with my day. Later when I got home from school my mom asked me from behind the kitchen island, “Guess what I did today?” I said, “What?” BANG! She plops a big injury boot up on the counter. She tore two ligaments in her ankle that morning around the same time my ankle was hurting in class. I don’t know what everyone else believes, but personally, I believe that love can be so strong you feel people’s pain for them. This was the most fascinating example of this intense love that I could think of from my life. Emotional pain is much easier to feel for someone, but physical pain takes it to a whole new level. So, now you understand just how connected I am to my mom.
When my mom started getting sick I felt bad and did what I could to help out, but figured she’d feel better soon enough. Like I said, Lyme disease is very misunderstood so there was no time line or list of symptoms and treatments that we could rely on. It was almost nice to get to take care of her for once after the millions of times she cared for me when I was sick. She never got sick when I was a kid, so this was new. However, she wasn’t getting better and I was only sixteen—therefore I was selfish, pissy, and impatient much of the time. I didn’t want to take care of her anymore; I wanted her to take care of me again. My dad was traveling a lot for work and had to commute to Ohio. My sister was now in college, so a lot of the time it was just my mom and me. I loved the time I got to spend with her, but now she was sleeping, crying, and very out of it most of the time.
I began to get overwhelmed because I couldn’t fix her. When my mom feels any kind of pain it bothers me immensely. When I took her to the foot doctor a few weeks ago, just seeing the doctor press on the spot that was sore for her made my insides go limp. I absolutely CANNOT stand the idea or sight of my mom in any sort of pain or discomfort. Her illness was not just physical though, she was completely depressed. I was so distraught, but I didn’t identify it. Only now looking back can I see that I was terrified, devastated, and dealing with serious disenchantment. I was going through my own difficult time completely unrelated to what my mom was going through, but of course it didn’t help that we both were depressed and needed each other greatly.
Each time I spoke with my mom during that year, she cried. My heart broke every time we spoke and so I turned to avoidance to protect myself from the pain I would try to feel for her. Again, I didn’t realize this at the time—I was an obnoxious, but understanding 16-year-old girl. However, I can see it all so clearly now. The disenchantment that I mentioned was with realizing that my mom was a human being. I always saw her as a superhero (which she absolutely is), but even superheroes are human. As I grew up my mom climbed a mountain multiple times, kayaked, rafted, did kickboxing, was called “The Beast” at her gym, and was always on the go and moving forward. To see her pause and just stop it all and lay on a couch for what seemed like eternity was despairing for me. I got angry and wanted to force her to be better. I just couldn’t understand it. It hurt me and I felt alone and abandoned. Then, I felt intense guilt. How could I be making this about me? Now, this guilt only came in once I was out of my own depression and had the capacity to identify my own feelings and thoughts on the matter. This was a big breakthrough for me. I finally made a mature, unselfish decision: I had to have strength for my mom. I had to stop being angry, sad, and selfish and shift to being supportive, motivating, and strong. I stopped running away when she needed to cry and rather listened and gave her a shoulder to cry on. She was a human, just like me, and she needed someone to hold her up as she got through something so painful that I had to accept I just didn’t understand.
The most difficult realization I had after I decided to support her was that she didn’t want to get better. Rather than getting angry, I just decided to let it be and try to encourage her subtly without being pushy (whether she noticed or not). I had to keep myself optimistic for her. The day my mom said to me, “I’ve figured it out! I have to stop being afraid to get better” was a day where I felt 100 pounds lighter. I had known that all along, but she had to realize it for herself. That’s not a thought you can put in someone’s head and expect them to agree or even comprehend. My mom’s transformation was beautiful and inspiring. Through all that, she is officially the strongest, most evolved and enlightened person I know. I feel so lucky that I get to be her daughter and learn from her because I believe she has lessons to teach that everyone needs to learn.
So, aside from my personal experience there are a few points I want to make very clear here. When dealing with a loved one who is chronically ill:
- Accept that you don’t understand what they are going through
- Trust how they feel
- Try not to get angry at them
- Motivate, support, and make yourself available
- Don’t push your ideas on them
- Give them their space, but always keep your eye on them
- Don’t forget who they are (the emotional aspect of illness can have intense consequences and make them seem frighteningly different)
- Stay strong for them; even when you want to break down—it is not your turn, you have a duty to help them.
- Love them
The whole experience was one of the hardest times of my life. However, my relationship with my mom is stronger than ever. She is my mother and my best friend. I go to her with everything I need to and she does the same with me. Our relationship is now a two-way street, which is more fulfilling than the more childish one I had as a teenager. I love being my mom’s friend and I love when she comes to me with happiness, sadness, confusion, and enlightenment. I will always take care of my mom and she will always take care of me. It’s an absolutely perfect way to be and the experience was hard, but nonetheless perfect.