Earlier today I posted on facebook and the interest it caused surprised me a little. I already knew that many people had invisible illnesses and I know how it feels when people make remarks that unknowingly hurt us but I was still a little surprised at how quickly people started sharing my post.
I don't normally talk about my ailments unless I need to do so. I have an autoimmune disease called Still's disease which attacks organs and the body. It causes muscle and joint pain, daily fevers, swelling, throat pain, fatigue (a grossly misunderstood symptom), vomiting, nausea and a host of other unpleasant symptoms. The treatment is almost as difficult as the disease. The practice of rheumatology is in the dark ages when it comes to pain management. In other words, they don't know what to do to manage pain so most of the time a person becomes non-functional due to chronic pain. That causes severe illness because of the chronic stress that occurs on the body by unremitting pain. Because yes, pain can indeed kill you.
My work schedule has become severely limited and my artwork has changed a lot. I didn't even really notice. It was just a reaction to my circumstances. I live my live as joyfully and as happily as I can while making the adjustments I need to for the restrictions my body places on me. Some days I claim victory because I got up and let the dogs out to pee. I can brush my teeth tomorrow.
The following is the post I wrote on facebook:
Yesterday a lady I know told me quite confidently that she didn't consider me ill because I didn't look ill. After i shut my mouth, took a breath and collected my thoughts, I told her what an invisible illness was. I have an auto immune ill...ness. I do my best to NOT look ill when I leave the house. I have cut my work schedule back to only a few hours a week and by a few, I mean three, and that knocks me on my ass.
I don't wear clothes with zippers, buttons or snaps. Most people don't notice things like that. My cute hair requires no work. My husband bears the brunt of the work at home and he is an absolute gem about it. The last time we went to a museum, I had to use a wheelchair.
So, you may look at me and see me limp a little and think I can take some Aleve and feel better. Right. I have prescriptions for my pain. On occasion they are not enough and I just cry. I don't go places or do things because it's too painful or too difficult (steps, walking, standing).
I have daily fevers, chronic pain, swelling, daily flu-like symptoms, fatigue and more from my illness and I do my best to be a wife, a friend, an artist, a worker, a teacher and a citizen. I don't like being a sick person and try to hide it as best I can. I have asked strangers to help me up or down steps or carry bags for me when I just couldn't do it. I was so sick with pain one year when I voted that I had to have help filling out the ballot. It was humiliating. The woman was so kind and gentle and did her best to maintain my dignity that it still makes me cry.
As the stores fill with people for the holidays and the crowds get short tempered, please remember that a good portion of those people have an invisible illness. It could be the person behind the counter who hasn't had lunch and is late for her medication, the person in front of you who is slowly shuffling and is confused because he just doesn't get it through hid neuropathy fog. You just can't look at someone and see whether they are sick or healthy. If it was that simple, no one would die of heart attacks or strokes or a host of other illnesses.
Be kind, like you teach your children. Be helpful, like you ask young people to be. Be a blessing to someone who is suffering and you will be blessed.
I am an artist who has a supporting crew of two dogs, three cats, a parrot, some ducks and a pond full of fish for inspiration. My husband, Erik, is technical advisor. My studio is bright and cheery and I spend time every day making something.