Sick People Doing Things
I realize I don’t fit the ‘MO’ of what a sick person is suppose to look like.
I guess I can’t blame people who don’t get it, I’m a walking anomaly in many ways:
-I’m a writer without a laptop
-I’m a Pilates instructor with chronic pain conditions
-I’m planning my next clinic appointment in conjunction with planning our next vacation
...I’m simply a sick person doing things.
Just the other weekend I went from car sickness that caused my friends to pull over so I could vom, only to be bopping around and singing in the car an hour later. Fast Forward to a full blown level 10 migraine the next day. I don’t always understand why these symptoms are the way that are but I try to just take it as it comes and not dwell on the bad for longer than I have to. My enthusiasm for life in general seems to confuse people, I would venture to assume those people haven’t been bedridden with pain for days on end quite as often as myself.
On any given week I’ll have low pain/active/full days while simultaneously having a stretch of “bad days”, I don’t leave the house or even my bed during. Some days I surprise myself but most days I’m reminded of the obstacles I’ll face to maintain the appearance that I’m “normal”, happy, and seemingly healthy.
Sometimes I feel guilt for enjoying and sharing the good days. It feels like I’m giving ammunition to the people who doubt, question, and judge my illness. I admittedly spend too much energy worried about what people who don’t get it see when I share on here. In the same breath I also worry that I’m being negative, a downer, a complainer when I share the hard stuff. Truth is, people can only meet you as deeply as they have met themselves and what they choose to see in me reveals a lot more about themselves than it does about me.
When I feel self conscious about (over)sharing whatever aspect, I remind myself why I created this page, #invisiblyenhanced I wanted a place to collect & share all the things I do to “stack the odds in my favor”; anything that brings me happiness, a place to house all my writing, photography, inspiration, advocacy , self-care and treatments I do to manage my chronic pain. It’s both my professional and personal page and you’ll find my favorite recipes, products, people, places, podcasts, books, music, clothes, pain management, care all here. I hope to connect to people who also have invisible illness & chronic pain and offer solace. I share my story hoping others will feel less alone in theirs and to make invisible pain more visible to raise awareness.
To the people reading this that can relate; remember that you don’t need to prove your pain to anyone. Your pain is valid, even if you don’t look sick, or if you are active and happy. You’re allowed to be sick AND happy. There are no extra credit points for needless suffering. Don’t give away your limited energy to people who are committed to misunderstanding. Continue to lead by example. Speak your pain, share your story, make your invisible illness visible. Share for the people who root for your good days and share in your happiness, gratitude, and attempts to #livfully despite the heaviness of living with chronic pain and ALL the ways it effects our lives. The people who need to hear your story will find you.
And lastly, thank you to the people who continue to get it, to the friends who are patient and understanding, to the employers who extend flexibility, to my Paul who shows up in every way imaginable. To the people who listen with open hearts, who hold happiness for my “good days”, space for my bad, and appreciate my effort to #livfully , I’m so glad we found each other along the way, thank you for making me feel less alone in this health journey.