It’s a cute picture, isn’t it? Mother and daughter, happy together and smiling. Unfortunately, I am someone who has an invisible disease. You can’t see my pain just by looking at me. You wouldn’t be able to tell at all there was anything different between you and me when you look at this picture. Unfortunately, your wrong.
This picture was taken on Christmas Eve around 10pm. I had gotten up, showered, dressed (even blow dried my hair!) that morning. Just in doing this I have completed a Herculean task that most people would think is nothing. But to me – this is a solid accomplishment and something to be proud of. Now that I’m all dressed and hair blow dried, I am exhausted. I have to lay down. I needed a solid 30 minutes of just lying down on my bed to get any further that day.
Upon crawling out of my home after resting, we arrived at my Grandmother’s home. My grandmother is 91 and not someone to mess with, the lovey dovey gene skipped her over totally. My entire family is here. I have to stand up, walk around all over the place, and say hello to all these people. I can barely stand for 10 minutes at a clip before needing to sit down before I fall down. So, naturally I found myself a place on my grandmothers couch.
Now, I love my family, I really really do. I don’t want you to get the wrong impression here. They are funny, interesting, good people who genuinely love and care for me and I for them. But, none of them, not one, understand me or my disease.
When we are together in social situations I pretend to not feel the pain, I hide it to the point that it starts coming out as sweat, the pain is so intense. I just wipe my brow with a tissue and crack a joke about early menopause. Now, is it my family’s fault they don’t understand how bad my condition is? No. Is it my fault they don’t understand how bad my condition is? No. There is no blame to be had in a situation like this, it is just poor communication skills and fear rolled up into one.
If I truly act like I feel in front of my family it would deeply worry and scare them. So, I grit my teeth, smile, and nod. When my loving family ask me how I’m doing or feeling (for the 15th time in the day) I smile, nod my head, and say “I’m doing good. Obviously I don’t feel like getting up and dancing the polka, but I’m getting treatment at hte best hospital in the state with the best doctors who specialize in my illnesses”. Sadly, I have only told them about my physical conditions and not my mental ones, for the obvious fear of being judged or ashamed.
When you look at this picture you just see a happy mother and her daughter. I see a chronic pain and mental illness warrior who is determined to make the best of her life, and sitting next to her is the reason she’s a warrior and will make the best of it, her daughter. When I look at this picture I see a woman so fatigued she can barely sit up, a woman who is in terrible pain, a woman who wants nothing more than to cry out “it hurts, my god, it hurts” – but I don’t. I never do. Because that isn’t any way to get through life. You learn to deal with the pain, and you learn to live as a warrior as best as you can.