But you don't look sick and other ramblings....

So a few months back, I was looking online for a 'lyme-awareness" t-shirt. While searching on Cafe Press, I came across a t-shirt that said "But, you don't look sick" and several other shirts with similar messages. I thought that they were odd things to wear written on a t-shirt and wondered why anyone would. I now understand why people created them, although I would still never wear the shirts. Shortly after being diagnosed, I took to the Internet to find support and answers. In that search, I came across stories of a few well known people that are suffering from Lyme disease. Two of those people are female authors that I have great respect for. Amy Tan (author of The Joy Luck Club) and Rebecca Wells (Author of The Ya-Ya Sisterhood books). I remember relating to their words even though I had barely begun my fight in battling this disease. Now, I am recalling that in both of their accounts they mentioned how people were constantly pointing out how great they looked and how they didn't look sick, even though they felt terrible. I didn't quite understand why this was important. In the documentary "Under our Skin" one of the women, Dana, talks about the wide range of outer appearances of Lyme patients. Some people are wheel chair bound while others, as she put it, are the walking dead. These people look totally normal and yet are experiencing great struggle in their bodies. Right now, I am one of these people. I do have times where I am pale from anemia, am puffy from inflammation, times where I am falling down or tremoring and it is obvious. Much of the time though, I look very normal. In fact since treatment started, I often look better than I have in a long time. The antibiotics have cleared almost every blemish from skin, have caused my hair to grow thicker and stronger, make me sensitive to the sunlight creating a tan after only minutes in the sun. People are constantly saying how great I look and say 'I'm glowing'. I appreciate the compliments, even though I often feel horrible on the inside. What I don't appreciate is when the compliment is given with a hidden judgement. Rebecca Wells wrote about the same experience. Why does this matter you may wonder? Well, because it is really hard to be battling chronic pain, troubled organs, horrible headaches and to have people look at you like you are trying to get away with something. There is this hint of doubt when they are pointing out how 'good you look', instead of an offering of a real compliment. WHY WOULD ANYONE WANT TO BE GETTING AWAY WITH THIS? That attitude nurtures that voice that still sits inside of me thinking that I can somehow stop all of this by willing it so. Those "it's all in your head' thoughts return even though I know better. I still have moments of feeling like I could will it all away. And sometimes I try, with not so great results. I end up wearing myself out completely. It sets healing time back when I try to live like a person who doesn't have limitations, when I do. I don't have to be defined by my disease, but I do have to take care of myself with awareness of what my body can and can't do. I'm working on not letting other people's ignorant assumptions affect me., but I do still get my feelings hurt.

I think it's great that there are positive benefits to the treatments. I don't want to look sick. I like that my skin is clear, that I can tan easily, that the puffiness is better than it has been. I wish others would not point it out to me like I'm trying to get away with something though. Seeing the t-shirts online makes me realize other people are irritated by this same problem. I think wearing t-shirts like the ones below is completely over the top, but I suppose I get what would push someone to that point.








I don't mind being reminded that other people have it way worse. I remind myself all the time. I think it's a good thing to put things in I also think understanding that 'this too shall pass" is a beautiful reminder and very true. I am, however, a little tired of the nap comments and working comments. I am still working as much as I can. There are many days that I would take a terrible day at work over being nauseated and in intense pain. I'd just like to urge people to think before they make comments. I'm only posting these silly shirts because I find it pretty interesting that this is a pretty wide spread thing people with chronic illness face. I think educating people in a compassionate way is far better than wearing a ridiculous shirt that really just makes the person look crazier to the outsider. I also think if someone is mentally ill enough to make up a chronic illness, they too need help and not condescending comments. Awareness and education are the key.

I got bit by another tick this past week! Yep, really. I am starting to think they are hunting me down. I immediately got a reactionary rash covering my leg, but it went away within hours. My doctor wanted me to get the tick tested, but I soaked it in rubbing alcohol and ended up drying it out before I knew she wanted me to do that. I hope that the 4 insanely strong antibiotics I'm already on will take care of any possible exposure I may have had.

This illness and experience has really calmed me down in so many ways. I really feel like I am seeing things in a better perspective. When you struggle to do just the normal every day things, you realize that energy should not be wasted on the trivial things. I see the way people create unnecessary drama in their lives and expend their energy in unproductive ways. I also have become aware of the places and people I have wasted energy in and on. I have a limited amount of energy now, so I choose to spend it in places that are worthy of it. I have a lower tolerance for other people's unhealthy b.s. I may struggle to do everyday things, but I have a clarity I didn't have before and I'm thankful for it. That's one of the blessings of all of this. Clear skin, thicker hair, better parking places, and a new lease on life are a few more.

You don't look sick, but you are.... So conversely, I have started to be aware of people who are not battling a chronic physical illness and are living, by choice, in really unhealthy ways. If you have your health, please appreciate it. Maybe take a small lesson from me and realize without having to get very ill, what a blessing life and health are. I suggest not sweating the dumb shit, being grateful for your healthy body, not polluting it with unnecessary toxins or other people's drama, and using your energy to do something you love. If you feel stuck, seek out support and help from places that nurture you and break old patterns before you make yourself sick. If you don't have physical limitations, don't live like you do! You don't have to. That is a blessing. Live it.