When the Invisible Becomes Visible

“None of these people are even disabled. I don’t see why they get seats,” a man shouted from behind to his friends. “My wife has an incurable disease!” my normally mild mannered and positive husband screamed back. He then went on to tell the average height, short red curly haired, middle aged man that he cannot judge people. He went on to explain that illness is not always visible and he shouldn’t make comments as he did without knowing what people are going through. Wow!

The setting was a rock concert in downtown Los Angeles, at the Wiltern Theater. It’s an indoor theater with multiple bars within and general admission (no seats, unless you were on the balcony) atmosphere. A review of the show described the audience as young adults and middle aged folks who seemed equally confused with the presence of the other.

When my RA symptoms obviously presented themselves back in April my husband coped by buying lots of concert tickets (Patrick Watson, Glen Hansard, Tallest Man on Earth, My Morning Jacket, Wilco, Florence + the Machine). Concerts are one of my favorite things to do. They truly rejuvenate my creative spirit. However, now I’m constantly having anxiety over not being able to walk, dealing with stairs, or having pain that’s too intense to enjoy the experience.

My husband called each theater in advance to see how they may be able to help. We learned that each theater had ADA seating which has eased my anxiety. Our first experience at a tiny dive venue was great. Our second experience was not nearly as great. My husband and I were separated for a period of time to “make sure there were enough seats for the disabled.” There was plenty of space and it was absurd and upsetting. In the end, my husband was able to join me. Our latest experience was okay, until the unsympathetic and judgmental crowd behind us nearly ruined it. Yes, we get the best seats in the house but I pay the price every single day.

This brings me back to the moment where my husband told off the rude and obnoxious man standing behind the ADA section. Until this moment, I had not realized the toll RA was taking on my husband. He is not one to speak up in hostile situations. He is stoic, supportive, calm, positive, caring, and kind. He has remained this way since my thumbs stopped working and is the greatest caretaker. This moment helped me clearly see the big picture and understand the anguish he carries inside. Although, it was upsetting to see him so angry it was also a relief to be protected and truly understood. He truly lives with RA too and that was invisible to me. In some ways, I was as ignorant as the man behind us.

The man actually apologized for his ignorance and proceeded to kiss ass. I thought wow- thanks to my husband that guy really learned something tonight. If people speak up it could really make a difference! Then I saw him seated in the available ADA seats later in the night. Ugh. Then again, maybe some people will never get it.

In this blog I figuratively take my hat off to my husband, mom, step-dad, and honorary-father. Sometimes I feel so alone with my disease. But I have to acknowledge the unfair toll this has taken on my family who cares so much. Each of them have offered to take the pain and meds for me. They would literally do anything to help. Despite it all, I am superbly grateful and lucky. Life is really a beautiful thing.

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5 comments

  1. I loved reading your blog. I was just diagnosed with RA and have been really upset. Your blog put a well needed smile on my face 🙂

  2. I was just diagnosed too after months of being mis-diagnosed, my symptoms are really bad. I get anxiety too about doing anything that requires walking, going upstairs, walking on uneven ground, and just commiting to anything in the future due to not know how I am going to feel. My husband is amazing too and an awesome care taker and until I read this, I didn’t think about how he is living with it to and how it affects him. Thank you for sharing.

    • Thank you for reading Rebecca! I’m so sorry to hear the diagnosis was a hard process. I’m hoping time is helping you to cope with each day. This isn’t for wimps!

      Since I wrote this post I have been reading how I can be more considerate to my husband. It has been very helpful. It’s so easy to think only think about your own pain and suffering. I have found that concentrating on those around me to be very helpful and comforting. My husband and I have also had some amazing conversations. I have read that chronic illness is detrimental for marriage but have found that my husband and I are closer than ever. 🙂

      • You’re right! This also makes me fully understand that my husband definitely meant the “in sickness and in health” part. If this were a test, he’d pass with flying colors! : )


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