Melissa Swanson interviews Julie Ryan, a freelance writer and blogger who lives with fibromyalgia, migraines, cluster headaches and endometriosis. On her blog, Counting My Spoons, she shares her inspirational view of living with chronic illness. You can connect with Julie on Twitter, Facebook or via email (firstname.lastname@example.org).
Melissa: What was your life before fibro?
Julie: How far back do I go? Looking back, I think Fibro has always been there lurking in the shadows. I remember having too many instances where someone would sit too close or hug me a little too hard and I’d complain about it and they’d just look at me sideways. When I was diagnosed with Fibro, I was just getting back to “normal” after spending a year dealing with TMJ and the chronic migraines that came with that. I’d pretty much already stopped working because of that. As I started getting my life back, I’d gone back to school and it was at the start of the second semester back that I got hit with what was eventually diagnosed as Fibromyalgia.
Melissa: Before any of that?
Julie: I was free. I was able to go and do what I wanted. I could stay out all night and still function the next day. I slept like a normal person. I worked a lot. I had a life.
Melissa: When did you show your first signs and what were your first symptoms?
Julie: Again, I think looking back I was showing symptoms in my early 20s if not even in my teens. I remember times in my teens where I’d have bouts of “recurring mono.” I had mono in high school and there were many times after that I’d get stressed or overworked and it would flare up. On those days, I might come home from work at 5 pm and crash only to wake up 24 hours later.
Melissa: Besides fibro, what other coexisting have been diagnosed?
Julie: Migraines, endometriosis, thyroid disorder, cluster headaches, TMJ, and probably something that I’ve managed to forget about.
Melissa: How did it initially change your life?
Julie: Initially, it took my life away. I went from a full-time college student who was also running a business to dropping classes just to finish the semester. I worked as little as possible. Within a few months, I was back on the couch full time, trying meds that only seemed to make me feel worse instead of better.
Melissa: What is your life like now?
Julie: My life is once again full and rich. I have limits, I sleep more than the average person, I can’t stay out all night and expect to function the next day, I take an entire shot glass full of supplements twice a day. BUT, I can get out and enjoy life and I do. I was able to return to school and finished my degree in December of 2015. I am working full time again and have started a new business trying to help the chronic illness community. I go out and have fun with friends and most of the time I feel quite normal. I still have bad days on occasion. Days where the fog or the fatigue take over. Rarely does the pain take over anymore. When bad days happen, I know that they won’t be more than a day. They will pass, so I just rest and let it be.
Melissa: What are your biggest battles now and how do you confront them?
Julie: I don’t really know what I’d say my biggest battles are. I try to confront things head on and just deal with them as they come so that they don’t become a battle.
Melissa: What is the best/worst thing that has happened due to illness?
Julie: The best thing that has happened is the new opportunities that have come because of my illness. Prior to my illness, I wouldn’t have thought about writing as a professional. I hadn’t given a lot of thought to the chronic illness community, either. I began my blog before I was actually diagnosed, and as a result of my blog, I’ve had many paid writing opportunities, so I can now say I’m a professional writer. As a result of my connection to the chronic illness community, when I finished school I decided to take my background in sales and marketing and combine with my experience with blogging and create Chronic Illness Bloggers network for bloggers with chronic illness, to provide them a way to connect with companies who have products and services that can help us.
Melissa: What do you think/hope will change over the next five years?
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Julie: I really hope they find the source of Fibromyalgia. I think that’s the only way they are really going to develop real, adequate treatments that help the majority rather than just a percentage of patients.
Melissa: What made you want to start a blog?
Julie: I already blogged about my personal life, and as I became ill, I found that more and more of my posts were focused on that. I decided to start a blog dedicated to my illness so that my friends who read my personal blog wouldn’t be overwhelmed by those posts.
Melissa: Where did you come up with the title Counting Spoons?
Julie: It comes from Christine Miserandino’s essay The Spoon Theory. Early on, before I was even diagnosed, I visited our local Fibromyalgia support group. Someone there referenced The Spoon Theory. I’d not heard of it so I looked it up and it had me in tears because it so perfectly described something I was struggling with so much at that time. As a result, I felt that “counting my spoons” was what I was doing from day to day, so I made that my blog title.
Melissa: When did you decide to create Chronic Illness Bloggers?
Julie: I guess the idea came to me in late 2015. I’d looked at many blogger networks trying to find opportunities for my blog, but mostly I didn’t fit. Even in my local blogger group, I was an anomaly. The other bloggers in those groups didn’t really understand the challenges of chronic illness, and my topics didn’t line up with theirs. The businesses that use those networks offer great products and services, but again they just didn’t line up with my message. I knew there were a lot of great products and services out there for the chronic illness market and that we have a huge community of bloggers with chronic illness, but there was no way for all of those pieces to connect. There wasn’t a community just for chronic illness bloggers, so I decided to see if I could create it.
Melissa: What is CIB?
Julie: Chronic Illness Bloggers is a network (or community) specifically for bloggers with chronic illness. We provide a place for them to connect with each other and work together to grow their blogs, as well as opportunities to connect with businesses that have products and services for the chronic illness market. We create campaigns to promote those products and services through product reviews and sponsored posts.
Melissa: You are an inspiration to so many; what advice do you give to others?
Julie: When it comes to chronic illness (or anything in life), keep plugging away until you get the answers you want. If what you are looking for isn’t there, create it. So many of us with chronic illness struggle to get through the day but it doesn’t have to be that way.
Melissa: What do you wish people knew about your illness? Your group? Your mission in life?
Julie: I want people to know that there’s more out there. That just because you are chronically ill does not mean it’s the end. You can still live an inspired life. You can still help others. You can still have passion and purpose in your life.
Melissa: What is next for you?
Julie: Who knows? I don’t. I try to take things day by day, keeping my eyes open for new opportunities and making myself available to help those I can. You never know where that’s going to lead, but I know it will be good.
Melissa Swanson is a chronic pain patient, advocate, and author of Ravyn’s Doll: How to Explain Fibromyalgia to Your Child. Through her Facebook page, she offers positive encouragement, medical information, resources, and support to 16,000+ fibromyalgia and chronic pain patients. In addition to her own blog, Melissa has been published in “Living Well with Fibromyalgia” and the NFMCPA “Advocate Voice.” She’s a graduate of the 2014 Class of Leaders Against Pain Scholarship Training sponsored by the National Fibromyalgia & Chronic Pain Association and a member of the Leaders Against Pain Action Network.