As My Joints Turn

My Autoimmune Soap Opera

*** Updated on 9/28/2015: This is my Wildcard Submission for #RABlog week Day 5.  One of the topics was I feel supported, so I am using this old blog to share.  I think it fits the topic of feeling supported.  I still feel this way. Hope you like it.

Don’t forget to check out the other Day 5 blogs:

When I first got sick, I felt utterly alone.  Sure I had family and friends who were there for me….but my internal struggle with my diagnosis really pushed people away.  I had to learn how to live with my disease before I could handle how others lived with my disease.  My family and close friends felt sorry for me.  I’ve had relationships end because I have no energy or my constant pain level prevented me from doing things.  I had one boyfriend who constantly bombarded me with “natural” cures.  Many I had already tried and failed.  He couldn’t seem to accept me and my disease.  He wanted to cure me.  In one way, it was sweet.  In a million other ways, it was heartbreaking.  He didn’t have my back.  The relationship was doomed because the more I felt he didn’t support me, the less I supported him.  It becomes a negative loop in the lives of many rheum patients who don’t have people to support them at home and work.  You really need people to have your back.

It’s been a long time since I was diagnosed with autoimmune arthritis.  I’ve had 3 jobs during this period.  With each new position, came the fear of having to tell people about my disability.  I am pretty open about living with autoimmune arthritis, not because I want sympathy, rather because I am so fearful people will think I’m lazy because I move so slow.  I also limp on a semi-regular basis so my invisible illness is often visible and I am always questioned about it.  I’m not a complainer, but I’m pretty direct about my illness.  End of the school year means lots of packing and moving for teachers & SLPs.  I don’t admit it freely, but it’s hard for me.  Some of my coworkers know that I seldom ask for help.  It’s not that I don’t know I need help, rather it’s that I know at some point, I might not be able to pack and move boxes on my own.  So I try to do things for myself while I still can.  Is it easy?  No.  Am I in pain?  Yep.  Do I still do it because I’m stubborn?  Absolutely.

What floored me over the past two weeks is how many coworkers have had my back.  People have stopped in my room to ask if I need help.  Random people walk by my room at the end of the day to carry stuff out to my car for me.  People advocated for me. Not all of these people know why I need help.  Many probably think it’s residual effect from breaking my leg last year.  Regardless….they’ve had my back…..and I never once asked for help.

As a member of the #rheum and #spoonie communities, I read such horror stories about acceptance in the workplace.  I feel lucky.  I have coworkers who regularly open my drinks for me.  Carry my bags and get me comfy chairs to sit in.  Not everyone understands what it is like to live with a disability, so when I experience these random acts of kindness, I’m humbled.  I’m thankful.  Now I’m off to rest so I can do it al over again tomorrow.

2 thoughts on “Got your back

  1. Love this piece! You are right in that so many people don't know how to be supportive, especially when we can feel great one day and barely be able to move the next! So glad you have nice coworkers to help you out like they do. That is a true blessing! Cheers from your neighbor on #RABlog Week. 🙂


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