Today's blog post is extra special and personal. It's special because we have two #ahasmembers who have agreed to be vulnerable enough to share their stories about dealing with chronic conditions. I was so thrilled they agreed to write this post because I have met so many makers who deal with some kind ongoing physical or mental health limitation that can not only have an adverse affect on their work but also on their income.
It's also very personal because as someone who has dealt with the saga of chronic pain and fatigue while struggling to receive a fibromyalgia diagnosis, along with other fun and mysterious ailments, I know exactly how much it means to have someone who you can identify with share their story. I also feel very strongly that women, in particular, deal with a great variety of health issues and are often not treated seriously when they voice their struggles or need for accommodation.
It's why so many of us find ourselves making our paths outside of traditional business structures. This isn't just some fanciful business you're striking out on to make your millions-- it is literally the only thing that will work for you. This post is for you. And I love to read your story in the comments!
Q: Tell us about what you make and how you got started.
Emily: I'm a bookbinder. (A what? That's still a thing?) Yes, it's still a thing! I bind books by hand. I got started in high school, making some pretty cringe worthy journals for a friend. My senior art teacher came to the rescue and taught us a simple case binding for the sketchbooks we'd use throughout the year. A few years later I took a Book Arts class with, now a dear friend and all around boss lady, Denese Sanders. I fell in love with the medium even further, and it was through her encouragement that I continued to pursue making books. I'm currently a full-time Bookbinding student at North Bennet Street School in Boston, MA.
Shana: I make hot cocoa, whole-leaf tea and sweets for retail and events. I started my business while I was recuperating from my first shoulder surgery. I had always wanted to be an entrepreneur but it took me a while to come up with a business that was right for me. Prior to the surgery I worked at Starbucks with the help of a pain patch, but it was very difficult. I had to request afternoon-only shifts due not being able to wake up early from dealing with fibromyalgia pain and headaches at night.
There would be days I would get in my car after work and just sit there for almost an hour due to body aches and headaches. After a while my shoulder pain got too strong for the medicine and I had to quit my job. Thereafter I had surgery and ended up being stuck in bed for seven weeks. I was emotionally and physically obliterated and depression had set in; that’s when I knew that I needed something to occupy myself with.
I started working on this business idea and it gave me something to hold on to during the hard days, and that’s how my business was born. It actually took approximately 6 months to get in the commercial kitchen and be able to work, but during that time I was able to acquire all the state and local licenses and permits I needed in order to get the business going.
Q: What chronic condition do you deal with, for how long and how does it affect your work?
Emily: I've struggled with depression and anxiety since I was about 9 years old. I wasn't diagnosed with depression until my early teens, and then major depression in my early twenties. Medication was always the first thing to be recommended, and I always railed against it; for no other reason than it scared me. I knew and was familiar with being depressed. In the best of times it was the fuel for many creative endeavors, which made it easier to dismiss when it was the fuel for crippling inertia and self destruction.
In hindsight I realize my understanding of what depression is was limited, to nonexistent; I thought if I was "tough enough" I could shoulder through it.
This system of avoiding deeper issues actually worked for a while. I stubbornly waded through life like one walks out to sea: Following a continually rolling sandbar, up and down and up and down, until a certain sinking feeling strikes solidly in your gut. The feeling is a sudden, accute awareness of two things: your feet are no longer touching the floor, and the tide is coming in.
The "pull yourself up by your bootstraps" mentality I used to make it through the day made my work inconsistent. I set myself up to reach impossible standards. I inadvertently set myself up to fail. And every "failure" was used as evidence against a person no one else in my life seemed to see. Not having any internal coping mechanisms to deal with this "overwhelming tide", and the hopelessness I began to feel, is what landed me in the ER this past winter.
Shana: I live with Fibromyalgia and Chronic Migraines. My doctor believes that the chronic pain I am experiencing could be from a nerve compression in my spine. My legs feel like electrical currents are running through them as well as burning sensations; I have numbness in my hands, feet, head and face, as well as pain in my shoulders that spreads to my fingers; my feet and hands are always freezing cold, I’m constantly having to go to the bathroom, I have lack of concentration, and suffer from daily migraines, fatigue and chest pain.
These symptoms can sometimes be mild which allows me to function, or they can be severe enough to knock me down, to the point that I am in bed for days. These problems can make it difficult to concentrate on my work because the pain is so strong. Also, the migraines sometimes prevent me from looking at the computer screen even for short periods of time causing my work to stop, and that can last anywhere from a few hours to a few days. If the pain is really severe I cannot run errands or fill orders and in these cases my husband takes care of it. Even when I do feel good it usually only last for a few hours and I am back in bed.
Q: How have you integrated your business with your condition and is it the reason you started your business?
Emily: I started making books and never stopped because it is a pure joy to me. I love doing it, it excites me. Book arts has helped me articulate thoughts and feelings that were difficult for me to otherwise express to others. I suppose in those ways, yes, it is the reason I started my business. I knew I wouldn't be satisfied doing anything else.
Shana: My current condition was one of the biggest reasons for starting my business. It was difficult for me to function in a job situation because I could not call in sick when I needed to as that would put my boss and co-workers in a tough situation.
I knew I needed the ability to work around my own schedule. I needed to be able to sit down or lie down if I needed to, stop when I needed to, go to urgent care if needed, sleep when I needed to. My husband bought me a special table I can use in bed for when I need to work and I set up my bed like my work station to help me be as productive as possible.
Q: What has having a business and having a chronic condition taught you?
Emily: Balance, balance, balance, balance. Did I mention balance? Support networks are a non-negotible, you must have them. "Let it go" from Frozen will get stuck in your head whether you like it or not (and you often wonder if it's stuck because you hate it so much, and just need to let it...NO! Enough!). Humor helps too.
Shana: Some of the biggest lessons I have learned are not to take my health for granted. On good days I used to do as much work as I could get done because I knew that it would last only for so long, but I realized that I need to have a balance of work and fun on those good days because if I worked too hard my flare-up would be worse; I also meditate and practice self-care.
Another thing I learned was self-compassion; I used to beat myself up for not being able to get as much work done as I thought I should. I would feel like a failure because after only 30 min of work my brain and body would shut down; sometimes when getting ready to run a work errand I would be exhausted by the time I got to the car and would have to come back in and lie down. I have now learned to accept that I am doing my best and that my best is good enough. I also have learned to look at what I have accomplished and to be proud of that. I created a "pep-talk journal" that lists all of my accomplishments so on days when I feel like a failure I can remind myself of all that I have accomplished.
Perhaps the most important thing that I have learned is to relax and to pat myself on the back often for my accomplishments (but not too hard because it hurts lol).
Q: What do you want other people to know about your condition?
Emily: Suffering in silence, being isolated, not having a support network, not having access to quality medical and psychiatric care: these kill people.
There are groups of people in this country that are more at risk than others for depression because of these factors, such as people living in poverty, people of color, and Trans people. With many of these groups intersecting. It's incredibly important that people have the access and support they need, because this is literally a matter of life and death.
Shana: I would want them to know that I am sorry if it takes a little longer to reply to an email or if I cancel our appointment at the last minute. It is nothing personal nor is it due to being irresponsible; I am just in a lot of pain. I have no problem sticking to a schedule; however the pain has a mind of its own. I promise I am not faking the struggle; even though I smile, I hurt every minute of every second of every day.
Q: Where can people find your stuff?
Emily: www.outwestbindery.com is still a work in progress, but I hope to have it fully up by late Fall this year.
Shana: People can visit my website at www.sucreaulait.com. My products also for sale at the 4th Street Market in Santa Ana and The Hood Kitchen in Costa Mesa.
Q: Anything else?
Emily: Thank you Sharon for putting this together! I'm thankful to be able to share my experience and be a part of such a great organization like Academy of Handmade.
Shana: Thank you for taking the time to put this together. I hope my experience can be of some support and education to others.
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