LAME JOINTS and social expectations….

Life has been stressful. I’m dealing with not only my job (online), flares, and a serious issue with my elderly parents. Stress is intense and it is taking a toll on me physically and emotionally. It’s always a fine balance in these situations. Trying to self-care while caring for others. Trying to stay focused on work, when you want to crawl into bed and sleep all day long. I’m doing my best. I’m asking for help when needed and I’m trying to get rest. I keep remembering all of this is a blip in a lifetime, and it will pass eventually, but all of it hitting at once makes life a little, I mean, a lot overwhelming.

In the midst of all of this, I had a wedding. Now I’m not a fan of weddings. A single woman attending weddings is always uncomfortable (in my personal experience). Add in rheumatoid arthritis to doing my hair, zipping zippers, etc. I’m exhausted by the time I arrive. I did my best to do my hair but my hands just weren’t cooperating. Updo to the rescue!!

Social distancing, outside venue, COVID precautions. I felt comfortable and excited to see long-time friends. I also know my friends take social distancing as seriously as I do, so it was a good night. Due to the virus, the wedding was outside. I wore low heals with a lot of support (because vanity is a biotch) but walking on the slight slope outside was hard on my ankles and hips. I didn’t complain. I sucked it up and ignored it. The bathroom was a mile away, but again, that is life. I didn’t complain. Then came the announcement that it was, “Time to dance”. I cringed. Why? Because although I enjoy dancing, I can’t do it and function the next day. I just can’t. All was well until a well-meaning friend, and then a drunk party-goer tried desperately to get me out on the dance floor. I always turn them down politely. I take photos, dance in my chair….I try to not act like a Debbie Downer, but I always end up feeling that way because I don’t give in to the “Come on, it’s just one dance” pleas. I end up feeling pathetic even as I paste on a happy face and act like it doesn’t bother me. I show my swollen ankle and say,

“Look how swollen it is, I just can’t do it” or

“My ankle is killing me, I don’t want to hurt it more.”

…..and I get a head shake as they walk away. So I’m left feeling like a loser.

People must think I don’t want to have fun. I desperately want to have fun, but my fun has changed as my disease has evolved. After 20 years, I still don’t know how to get past this situation with grace. People are just trying to have fun with me. I don’t look sick. I don’t walk around complaining all the time. A lot of people with varying levels of disability love to dance. So it’s not abnormal to be asked to get out on the dance floor, but the reaction to my refusal always cuts me deeply. I used to love to dance, but I hate the pain that follows more than I love dancing. If I had nothing to do the following day, I probably would have gotten up, but errands, chores, and helping out my parents takes precedence over shaking my bootie on shaky joints. I’m sure people think it is the polite thing to do instead of letting me sit there alone. I just wish it didn’t become an issue.

I’m always amazed that “no” isn’t accepted. No should mean no, right? And then not be a big deal. I’m fine sitting in my chair enjoying the music chatting with people as they go between the table and the dance floor. I just wish it didn’t bother me so much. I’m positive those who asked me haven’t thought about it since it happened.

Maybe I should just start wearing a sign next time. Which one would you choose? Tell me what you think? Which one would you choose? Feel free to add your own!

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

4 thoughts on “LAME JOINTS and social expectations….

  1. Say oh darn, you don’t look like a man who want sot get to knwo a rheumatic mess. Or Rheumatic mess, ready to erupt, lets party, all night and you come home and do my chores for five days.

    I am so glad Sheryl took me on when she did. How would I get along with that support? I have no earthy idea.

    Kelly, You honesty is awesome. I am glad you are my friend. By the way I hate weddings as well. That is why I have participate in one. 🙂

    Liked by 1 person

  2. It’s so hard for others to understand this with an invisible illness but I’m so sorry you have to say no and get made to feel that way. Hopefully be being so open about it here you raise awareness, which will help others and it might even help your friends understand a bit more.

    Like

  3. You look beeeeauuuutiful! I’m glad you got to see friends but I’m sorry for everything else an event like that entails. I get the issue with ‘invisible’ conditions (despite swollen ankles of course) and how to others it might look like you’re a party pooper, but if they have any sense of friendship and compassion then they’ll understand. They’re probably sad that you can’t join in and wish you could, but they don’t know how else to communicate that other that nudging you towards doing things you can’t do. I love the signs. Personally I think mine would have to be : “Out of order. Please choose another human”. xx

    Liked by 1 person

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