There are aspects I want to share with you about rheumatoid arthritis and why I write about my experiences. These reasons are extremely simple AND complex.
I AM NOT ATTENTION SEEKING. I do not want or need anyone to feel sorry for me. Every human has battles to face, and this is one of mine. Sometimes we find someone who is fighting a similar war. Those people are precious because they have a deep, first-hand understanding of the daily challenges of living with such a condition.
AWARENESS. Bringing awareness to the autoimmune disorder of rheumatoid arthritis helps dispel myths about the disease. It’s not the creaky-joint kind of arthritis, it’s not treatable by a magic vitamin supplement, and while diet may help alleviate some symptoms it does not cure. Knowing about the disease helps people avoid putting their foot in their mouths when running across someone with the disorder. For example, “Oh, you can cure that with a turmeric supplement and avoiding sugar.” No. You. Can’t.
UNDERSTANDING. Someone who doesn’t have rheumatoid arthritis or other autoimmune disorders will never understand what it’s like, and (as with any major health issue) I hope they never have to. Having basic knowledge can offer some empathy, which is helpful. For example, I’ve never battled cancer, so it is an experience I could not or would not give advice or pretend to know what the fight encompasses. In talking with someone who has experienced it, I can find empathy even if I don’t know what it’s like firsthand.
CREDIBILITY AND VALIDATION. Autoimmune disorders are unpredictable with timing, how hard they hit, and are often fickle. Making commitments is hard because the mind and spirit are willing, but the body can’t deliver when the disease flares. I’ve been judged both to my face and behind my back, which is quite hurtful. For example, “She’s using RA as an excuse to get out of this or that,” “She’s not very tough, shouldn’t she just plow through,” or the most hurtful, “She’s lazy.” I’ll let you in on a dirty little secret. Autoimmune patients ask themselves the same nasty negative questions EVERY SINGLE DAY. If someone felt the same pain, they would understand. If they felt the bone-deep level of fatigue, they would keep their words to themselves. If they lived with this just one single day, they would stop being so judgmental. If someone says they are unable to do something, PLEASE take them at face value. They are working around disease activity and it isn’t a reflection of their personal work ethic.
MARKETING. Yes. This is one of my reasons. Why? Because I have created a journal that has value to people newly diagnosed with autoimmune disease. I created it carefully with both patients and physicians in mind. It tracks disease progression, flares, medications, side effects, as well as emotions in dealing with a difficult disorder. There’s an area for physician questions to address at medical appointments. It empowers the patient to be their own medical advocate and physicians to track both the objective and subjective experiences of the patient. People need to know there is something helpful “out there.” Not just my journal, but there are others, as well. There’s an entire community from which to learn.
If you’ve read this far, thank you. Especially if this is something you are 100% not interested in reading about.
To my fellow “Spoonies,” I wish you many humongous soup-ladle sized spoons today and always.
Kudos, Dawn. I am sure that there are many people you are helping with your posts! Happy New Year to you and Mike.
I agree, having empathy for others is so important, no matter what they’re battling!
Thank you for writing about this, Dawn. It reminds me of some of the things you go through, as well as what a co-worker friend faces. Whenever I hear of the disease, I think of you and Margaret. God bless you both.
Autoimmune diseases are so hard to understand for most people.They are unwilling to accept that just because a person looks fine on the outside doesn’t mean they are fine on the inside. Chronic pain, often severe, is something so foreign to them, they chose to disbelieve. Thank you for sharing your experiences and creating Hoarding Spoons. It is helpful sometimes to realize you are not alone.
Thank you for educating, raising awareness and sharing your experiences. You’re doing important work. All too often, if a disease is unfamiliar or can’t be “seen,” people judge, question, doubt. This can be applied to mental health as well. Keep writing.