I Wear a Leather Jacket…. And I Love to Bake Bread, Can Jam, and Grow Organic Vegetables
I benefit greatly from living in a city where a girl with a motorcycle jacket and teal hair is approached by old ladies in the pharmacy waiting line so they can tell her how much they like the color. Those frequent encounters reinforce that I’m absolutely not weird compared to my city. I’m also not weird compared to any younger version of myself, each version I can think of readily would shake their head in disbelief that I am looking forward to someday having a child with a guy who *gasp* used to play football in high school and *gasp* still watches said games. She would be utterly disgusted that my favorite things are all so different (so borrrrrring) compared to what used to make the list. I think maybe that younger version of me was just trying too hard to be a stereotype I don’t actually fulfill, if I’m being honest to my own soul. So much has changed in me since I was a teen and I don’t want to be that cardboard cut out of a person, so easy to guess, so easy to figure out. Especially with chronic pain, I cannot afford to have such a flat personality.
So as I started thinking about it today, I went from bothered by my kinda strange hobbies to realizing something. In truth, all the things I worry will make me seem boring and “domesticated” are all the things that set me apart and keep people guessing. Lately I spend more time worrying about what will make me happy than what will make the people around me comfortable, which is a totally new thing for someone who used to be afraid to ask for a glass of water as a house guest. What makes me happy might not be exactly what is expected from my appearance, and I enjoy being a little odd like that, now more than ever.
With me, what you see is in no way what you get, but then again, it very rarely is. This is a reminder and a wake up call to myself, that my life is not entirely about my disease. My illnesses are not how I introduce myself. Yes, being sick has caused me to no longer be able to work a steady job or drive unless it’s an emergency, and yes, it inconveniences and pains me every single day, and yes, there is no cure and the pills do not help much. It has made socializing terribly difficult, indeed. But after all of that, I still have to live whenever possible, and even some times when it does not seem possible in the slightest. The things I have managed to do while in pain in order to pursue my inner goddess of domesticity, they are not small things, even to most healthy people. People who know my limitations physically often consider my refusal to give up these last hobbies and passions as crazy. My family and close friends think I am nuts for baking my own bread, or lugging out the massive pressure canner for that bumper crop of tomatoes from my garden. The truth is that while these tasks hurt to accomplish, they also sustain me.
The most important difference between working a few years ago and my much lesser version of “work” now: I don’t have to (and cannot) do it at a particular time. I don’t have to injure myself at someone else’s request over and over again all day long, I pick and choose what and when I do each thing. To say that my illness dictates my day is somewhat untrue. If it were true I would probably do a lot less than I end up managing some days. It would be easy to sit around all day and feel sorry for myself, and I’m not saying I don’t still do that some days. Sometimes I hurt so badly I would rather cut off several fingers than deal with another hour, and sometimes I cannot envision a life that adds up to anything while I’m burdened by these illnesses. It kills me to feel all my pre-illness plans for the future slipping through my fingers, and to have a lack of ability to contribute from both a financial and a physical standpoint.
Sometimes I feel like a monkey shot into space, left to slowly run out of oxygen, unable to control where I am headed or how long my ship holds up. Not a great feeling… but then I have to remind myself as gently as possible that my brain is a cruel liar in this area. I am not alone in space, spinning out of control, I am right where I need to be, taking it one day at a time. It helps to keep in mind that I am new to this and every single day and challenge I face is a learning opportunity. I don’t have to get it all right the first time, and I won’t. And that’s okay. Feeling hopeless and isolated is part of the process, as much as it hurts.
It was hard from the start for me to understand why I wasn’t supposed to tell people the name of this disease I had worked so hard to figure out, and which had such a profound impact on me in every area of my life. Why should I not be able to talk about my diagnosis? Had I not been diagnosed by a real doctor? I pushed back by declaring openly that I have fibromyalgia and chronic fatigue, to pretty much anyone who would listen to me, even for a little while. Explaining over and over and over again how certain symptoms felt, how I felt in the moment, how I had felt in the past, being as thorough and patient as possible while I was asked the same baffling array of stupid questions. Trying to be as insightful as possible, even though at the time I did not myself understand just how badly these two illnesses were embedded in people’s minds as joke illnesses, lazy housewife syndrome, etc. and how much I was being judged for telling my whole story. I didn’t care that I was oversharing, or bringing people down, or being a negative person, because to me I was just speaking the truth.
At first it was just a handful of symptoms, but then it became so overwhelming that I couldn’t keep track of them all and neither could my healthcare team. For the most part we do not know which symptom is caused by which illness, and which illness brought about the rest, or if they would have all manifested eventually no matter which conditions came first. Not knowing is okay too. Accepting that I may never know is finally a part of my story. It does not feel like giving up anymore. It feels like progress.
Getting to this point has meant a lot of sacrifice, I lot of crying and soul-searching and days of feeling listless, numb, and in serious danger of losing it at any second. I still visit those feelings often, and I know I will throughout my life, but they aren’t the end all be all of who I am. I am a painter, a gardener, an advocate for others, a seed saver, a baker, a friend, a lover, a person completely separate from the pain that I feel all of my waking and many of my sleeping hours. I will continue to have hobbies and passions and love in my life, no matter the effects that my illnesses cast across everything.
Appearances are so often deceiving, and whether that means that the crusty punk rock kid down the street will offer to help you change your tire in the rain even though he doesn’t own a car, or it means that I “don’t look sick” when I very much am, I think that’s just a part of life. We aren’t the neat little package we present ourselves in, and we never will be. I think we’re much better off avoiding labels anyway. Maybe that’s why I’m not so frustrated by that phrase as I know others with chronic illnesses are. It’s okay that I don’t look sick, because I also don’t look like I like to give frilly presents of jars of homemade blueberry jam and peach butter nestled in tissue paper, . But I am sick, and I do like to shower my friends and neighbors with art, homemade bread, pickles, jam, herbal remedies and laundry detergent, as well as homegrown produce. So obviously looks can’t tell you much!
We never know what we will find just below the surface. Sometimes we just need to look more with our hearts and less with our eyes. Healthy or sick, we are all so much more than our outer shells. I strive to be more than my illness as well.
Tags: #ButYouDontLookSick, adjusting to life with illness, break the silence: talk about chronic illness openly, but you don't look sick, don't buy the book cover, invisble pain, invisible illness awareness, looks are deceiving, mental health stigma, seeing beneath the surface, stigma against chronic pain
About Jessi Finds Out FibroHi, and thank you for finding your way to my corner of the web! I'm on a journey to empower myself and hopefully others through shared courage and compassion. I write Finding Out Fibro, a chronic illness and chronic pain awareness blog that is not just about fibromyalgia, as well as a new project making jewelry under the Etsy name Hopeful Spoon. Please check out the shop and share if you can! Thank you for your support! My other hobbies include defeating ableism anywhere I find it, upcycling old junk into funky awesomeness, raising my voice to erase stigma against invisible illness and mental illness, baking, collecting vintage kitchen ware, sharing body-positive messages, playing around in photoshop, abstract painting (especially in neons and metallics!), advocating for those living with chronic illnesses and mental health challenges, seeking safety and upholding visibility for LGBTQIA individuals living with physical and mental disabilities, researching and testing plant-based remedies for chronic pain, and spending all my spare spoons in my veggie garden. This is my opportunity to do more than just survive with chronic illness. This is me learning how to live well, even though there is no cure for the war my body is waging on me.
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