It’s 2am. I’m in pain and I’m mad. I’m mad that Lyme is keeping me up once again from the rest that I so desperately need. The pain is in full force, but writing keeps me distracted and distractions help almost more than the Advil, which is all I have to take at the moment. Pain meds would be wonderful to have, but my current doctor is not giving them. Instead he is sending me to a specialist who I have waited weeks to see. I am told he will be able to prescribe me something for the pain but I don’t know if this is true or why I need to see yet another doctor. I do know that I don’t have rheumatoid arthritis. I have Advanced/Chronic/Late stage (pick a word, any word) Lyme disease and what I need is some relief from the pain.
I am also upset that my pain comes at very inconvenient times. It messes up my plans, church responsibilities, family responsibilities, my daily normal routine and my social life. I am mad that I can’t trust my mind to work the way I’m accustomed to it working. For instance – before spell check this post is full of typos and spelling mistakes, because I can’t even remember how to spell simple words sometimes. I can barely think in complete sentences when the pain strikes and if it’s accompanied by nausea, my day is completely wrecked. The past couple of weeks have been hard because my illness is becoming unpredictable again and I absolutely HATE that. I hate that I have had to cancel and drop out of things I committed to do because I cannot physically do them. I really can’t stand it that my passions and the loves of my life are affected by this awful illness.
However, I think one of the hardest things to go through is the disbelief of others – the questioning looks, the “but you look great” comments that are so often heard by chronic Lyme sufferers. Last week, my illness was totally minimized in a way I had never experienced before. I have had doctors look at me and think I was crazy. I have had them tell me they weren’t going to help me anymore or run tests for my “symptom of the week.” They have asked my husband privately if he thought I was making everything up in my head and they have told me to my face that I am just depressed and that is all that is wrong. Do you know what it feels like be told you are crazy and you aren’t really sick when your entire body is aching? It is a very isolated and lonely place. But with those comments, I could chalk it up to doctors that couldn’t figure out what was wrong with me, so they wanted me to feel crazy instead of admitting that they had no idea what was causing my symptoms. I could rationalize their reactions to my pain especially when I finally got a diagnosis and test results that showed clearly that my body was ravaged by Tick-Borne Diseases. Sweet validation!
Recently, I struggled to get out of bed with joint pain and muscle stiffness. It felt like gravity was against me and weights were on my back as I slowly got ready for the day. There was no time to rest or take my time on this day because I was scheduled to volunteer at the girls school and I was determined to be there. After the teacher showed me what to do, I sat in a little chair at a desk outside the classroom and proceeded to make booklets and cut out letters for the bulletin boards.
I sat next to a mother of a child in a different class. My mind was very foggy, but I tried to be friendly and think of things to talk about. I did not feel good at all and was very uncomfortable, but I pushed through the pain. As we chatted, something in the conversation led to the upcoming fall field trip and she asked if I was going. I told her I couldn’t, but that I really wanted to. Then she asked if I was the room mother. I told her briefly that I wanted to be but was unable because I had been chronically ill for quite a while with Lyme disease and at the moment, I couldn’t trust my physical abilities from day-to-day. I didn’t really want to tell her about Lyme (it gets overwhelming to constantly explain the illness to those who don’t know about it.) Before I had a chance to think through what to say, everything was out there. I’m not in the habit of telling strangers or even acquaintances about my disease. Before I even had a chance to regret saying the words “chronic” and “disease” she said with a laugh, “Oh! Well, maybe that’s what I have, because I’m not feeling great today either.” This was after telling me about how even though she is a stay at home mother, she has a part-time job because she can’t stand to be at home all day and has too much energy, so she likes to keep busy all the time. Something that, at the moment I can only longingly dream about. She finished her tasks quickly and left for work.
Most days I have to mentally and physically prepare myself the day before I leave the house to go to my girls school, that is just down the road to cut out some letters and sight books. When I get home from simple activities like going to the store, I feel like I’ve run a marathon and it is vital that I don’t schedule anything the next day so I can rest up from my “day out.” At times, it feels like my body is my own prison from which escape is impossible.
For some reason, the flippancy of the words pierced me differently than any response to my illness has so far. I know she was probably just uncomfortable talking about sickness – most people are. She may have just meant to change the subject and I’m sure she didn’t mean for her words to come across harshly. But I felt really small in that moment. I think it was made worse because it was coming from a woman, a mother and someone who is in the same stage of life as myself. It stung and pricked my heart. It hurt to hear how others may view my illness. In a heartbeat, everything I go through was minimized. I felt like I was minimized… and simply because she was uneducated about Lyme Disease. I’m certain if I had said I was in treatment for Cancer, those words that were hurtful to me, would not have been said.
The pain, frustration, and heartache that I have become accustomed to was laughed under ones breath as if I had apologized for having a runny nose, grabbing a Kleenex and popping a Day Quil – because that was something she could relate to. She heard what she wanted to hear because we don’t want to think about stuff that hurts or makes us uncomfortable. She didn’t want to talk about disease or pain or being taken out of life. Neither do I. I desperately wanted to be the energetic mother about to leave for work. I sometimes wish to be on the other end of the conversation. When someone mentions disease, I want to be the one that can’t relate. How I would love to be unable to understand what chronic illness is all about. But I do – too well and I want others to learn from this conversation that inadvertently threw daggers at my heart.
When someone is telling you about something hard they are going through, something that hurts and is awful – just listen to them. Maybe it would help to imagine it happening to you or your loved one, even if you “can’t imagine what they are going through” don’t say that because it isolates and makes others feel very alone in what they are dealing with. Tell them you are there for them. Even a simple hug or note does wonders for me on my bad days…and my good days. Just be kind.