This piece was originally written for Keeping It Real with Arthritis: Stories from Around the World, a collection of over 100 stories by people around the world living with various forms of arthritis. This collection was curated by Effie Koliopoulos (Rising Above RA), and published by ImagineWe Publishers. Learn more and get your copy at keepingitrealwitharthritisbook.com.
Am I Snow White?
I know, that seems like a silly question. I mean, I am pretty fair-skinned, and I did have a stepmother, but she never tried to have me killed. I don’t come from royalty, I’m not the fairest in the land, and I absolutely do not love housework. That said, I feel like her in one significant way:
Having arthritis makes me feel like I’m living with the seven dwarves.
You know the cast: Dopey, Happy, Grumpy, Bashful, Sleepy, Sneezy, and Doc. They whistle while they work, and care for Snow White when she’s hiding from the wicked queen. What you may not know is all the different types of arthritis that make me feel this way.
While the word arthritis literally means inflammation of the joint(s), the term actually refers to over 100 conditions, and joint inflammation is only one of many symptoms. They can affect any organ and can even cause systemic (full body) symptoms as well.
In my left hip, I’ve got what most people think of: osteoarthritis, a degenerative condition caused by wear and tear of the joint, often from age, weight, or overuse. Bursitis and tendinitis make that one hip even more painful, and I'll probably need to have it replaced in the not-too-distant future. I also have a number of autoimmune and inflammatory conditions including rheumatoid arthritis, sarcoidosis, and Sjögren’s syndrome, which affect the entire body, including the joints. Finally, I have fibromyalgia, which falls under the arthritis umbrella as well, and brings with it a wide variety of symptoms.
All of these conditions have a profound effect on me, and not only physically. They have limited my ability to do so many things, from walking around the block to working around the clock. They have a mental and emotional impact, too, both from the conditions themselves and from the limitations they lead to.
Ultimately, these conditions leave me feeling like I’m living with Snow White’s friends, and they’re really rubbing off on me.
I feel Dopey.
There’s one symptom we don’t talk about much because it can be especially difficult to talk about while we’re experiencing it: brain fog. When this hits, it can be difficult to put a sentence together. I can re-read a paragraph or rewind a tv show multiple times and still have no idea what it was about. On the way home from my infusion treatment one day, I actually asked my mom, "Was I just about to say something else, or did I already say something else?" It can definitely make me feel dopey.
I feel Happy.
While I would not wish arthritis of any kind on anyone, there is definitely one wonderful thing that comes with this disease: the arthritis community. When I meet other people living with arthritis (either in person or virtually), there is an instant connection. I have found people who truly understand what I’m going through when the rest of the world does not. I have an incredible source of support, laughter, ideas, and information in my arthritis family. That certainly makes me happy.
I feel Grumpy.
There are infinite reasons to be upset with arthritis, and though I am generally a positive, cheerful, optimistic person, even I get depressed, anxious, and downright grumpy at times. It can take a while to find the right doctors, and some of the wrong ones can be infuriating. I’ve had doctors who were dismissive of my experience, my knowledge, and my wishes. When they couldn’t figure out what was wrong or how to treat it, they said it was “just depression” and left me at that. Living in constant pain and not getting answers or relief can be especially frustrating. When others around don’t understand, it can impact jobs and relationships, too. These can easily make me grumpy.
I feel Bashful.
Bashful is probably one of the last words most people would use to describe me. I am not shy about sharing my story or speaking up for what’s right through a variety of media. But when I am flaring (a period of amplified symptoms, more severe than usual), I generally retreat into myself. I don’t have the mental energy - or the desire - to reach out to anyone or respond to any messages. I might scroll through a few social media posts, but I don’t post anything anywhere. I surely seem bashful.
I feel Sleepy.
There is a level of fatigue that comes with arthritis that is completely unfathomable for anyone without it. It is tiredness so strong that I can barely keep my eyes open, but it is not relieved by any sleep. I can't even fall asleep, or I wake from it frequently. There's even a word we use, "painsomnia," for when we develop insomnia because of the pain. That fatigue envelops my entire body so that picking up my phone requires more energy than I can muster. Moving, writing, talking, thinking … all of these become too much effort for me. I feel lethargic; beyond sleepy.
I feel Sneezy.
This is probably the easiest to relate to. Because many of my arthritis conditions stem from the immune system, both they and the treatments for them leave me immunocompromised - that means I’m literally always sick. The systemic inflammation can lead to symptoms like fevers, chills, and yes, even sneezes! I take 27 pills per day, and I have an injection and an infusion every week, not to mention pain medications and non-medical treatments that I use as needed. Sneezy is only the beginning.
I feel (like a) Doc
Like far too many in the arthritis community, it took years for me to get an accurate diagnosis. I spent four years with doctors turning me away because I didn’t look sick, and another four years with rotating misdiagnoses as they tried to figure out what was wrong. I had to do my own research on symptoms, diagnoses, and treatments. I had to push for my doctors to perform diagnostic tests I’d learned about and to try certain medications I’d read about. One specialist was so impressed with my knowledge, he asked if I worked in the medical field. “Yes,” I said. “I’m a professional patient.” Like a doc.
It’s taken a long time to come to terms with this enchanted life, with everything (and everyone) that comes along with arthritis. But what it’s taught me, to quote Snow White herself, is that “I’m sure I’ll get along somehow. Everything’s going to be alright.” And even with arthritis, I can have my happily ever after.
Learn about the other 100+ contributors and order your copy of the book at keepingitrealwitharthritisbook.com.
