Invisible Illness

You may have noticed my rant about medical advice the other day. Or maybe you didn’t. Either way, I wanted to address when illness is not always invisible, when it is chronic, and how much courage it takes. I am not writing this because I am brave. I am writing this because I cried on the way to work.

This is not a lifestyle blog about sipping mojitos (who likes those, anyway? Pass the Jack–pre-Cervical Dystonia!) and spending the weekend some place awesome. This is about writing my way through an impossible situation and maybe adding a little levity along the way.

Last week, my Cervical Dystonia was causing me a lot of pain. The only way that I could go to work and concentrate was to wear big lidoderm patches on my the muscles that were tight and pulling. These patches aren’t pretty to begin with. In addition, they don’t stay on well, so I have started using strong tape to hold them in place. I like to wear my hair down to cover it, but I was just feeling so poorly that I couldn’t bring myself to style it. A ponytail was the best I could do, if I wanted to get to work before noon.

invisible illness


I had to place pain relief and quality of life over my vanity. It was on that day, that everyone in my office (thanks fire drill!) that everyone could see my invisible illness. Most of the time, I like to think that it is invisible, but the pain is written all over my face and in the way I walk. My head tilts to the side. My hand tremors. I cry. It’s fairly miserable on a regular basis.

However, if you notice the picture, I can’t help but smile. I’ve been conditioned since I could learn–you always put on a happy face. No matter what. It’s exhausting. It’s probably the worst part of having an “invisible illness.”

invisble Collage

I want other women of all ages to know that they aren’t alone when they have to face the public looking disheveled because they’re sick. They aren’t alone when they have physical signs of a much deeper condition. It’s hard, but my dad told me that those patches were my badge of courage. It’s been hard for me to work while I’m so sick. Pushing through the pain to sit in a desk all day is so taxing on me–physically and emotionally. But I have to believe that I’m not alone. I’ve found an amazing online support group and am eagerly anticipating the national conference in September.

Categories: Cervical Dystonia, Health | Tags: |
  • lesley

    i completely understand the suffering (in silence): i have had endometriosis for many, many years and cannot begin to describe the pain, the agony, the heartbreak, etc. i have had seven surgeries and am need of the eighth but i don’t think i can mentally or emotionally or financially afford it. i don’t just have pain during cycles, i have pain at the most inconvenient times. the endo has been on every organ (although the last surgeon said he couldn’t believe it wasn’t on my lungs yet – didn’t even know that was possible). the main issue i am experiencing right now is the intestines/colon which can be very painful but not explainable to most people. i have had two kidney stones, one of which supposedly doesn’t need removed, so when i have terrible pain at work i just say it is that stupid kidney stone acting up. there have been so many years of pain that i am pretty strong now but the emotional toll is impossible to convey.

    please know you aren’t alone in your journey, no matter what the disease, and that there are people out there to support you through it all. if needed, support groups (even online) can do wonders to lift your spirits.

    hugs and prayers

    • Oh, my! I knew that endometriosis needed a lot of surgeries, but 8 is so crazy!
      I’m actually in the process of considering my very first surgery ever to maybe take care of my neck problem for good. I’m so scared.

      I found a great online support group. There aren’t any physical support groups where I live, plus traveling is very taxing on my body. I don’t know what I would do without the internet.

      Thanks for your support! Writing this post was really hard for me. I actually cried when I read it to my husband. He asked me what I would have done if I had found something like this when I first got sick and I told him that I would have emailed that person every day until they were my best friend. So, if this helps just one single person feel better, it is worth it.

  • I understand too! I have asthma and while on an everyday basis it may appear as nothing is wrong if I go somewhere where there is smoke, or dust or dogs or something like that my chest normally starts to tighten. It is frustrating not always being able to do what everyone else does because of the condition. It is especially hard at work. When I am having issues, employers aren’t always sympathetic because they do not understand. They don’t understand that I need a treatment or after a treat I can be shaky and out of it for up to 3-4 hours.

    And I love what your dad said about them being your badge of courage!

    • Oh wow! I never even thought about that one! I have exercise and cat induced asthma, but when you need serious treatment, that’s a big deal! I know that really strong asthma attacks are scary–even just to witness. I would think they would be kinder!

  • How overwhelming! Sending hugs and comfort!

  • Oh Sarah I just wanted to say how strong you are for putting a smile on your face despite being in agony all day long. I’m so happy that you’ve found a support system to help you. Hugs

    • Thank you so much! Today the patches aren’t even helping. Since my neck is actually rotating to the right (stuck at about 45 degrees), I’ve been calling the doctor like a mad person, trying to get an earlier appointment for shots!

  • Sara Naeseth

    Thank you for writing this! I suffer from an invisible illness as does my sister (several in fact) and I appreciate you bringing awareness to it.

    • I am glad to write! I can’t believe how blind I was to all of the suffering around me before I was inflicted. It’s way, way more common than I ever thought. While Dystonia is relatively rare, there are a lot of common, but still invisible and painful illnesses.

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  • Sarah, this post is beautiful and brave and everything in between. Thank you. For sharing your words, your heart, and these pictures that give invisible illness a face. It’s so comforting to read posts like these and know that I am not alone in my fight – you are not alone in yours – etc. etc. It’s so comforting to know that we are NEVER alone. 🙂 I know neck pain and lidoderm patches all too well… What is it with them NOT sticking and us having to use tape?! Sending you hugs and love, my dear! P.S. You are GORGEOUS — that dress was made for you. 🙂

    • Awww, thanks!!! I was so upset when they kept falling off, so I asked my sister-in-law, who is a nurse, about what kind of tape to get. I ended up having to order an entire box from a medical supply company, but it was worth it because I used a lot of the tape when I had stitches on my finger and had to redress it.
      Are you going to see Cake? I’m really excited that they made a movie about chronic pain/invisible illness. The suicide aspect of the movie makes me a little uncomfortable because I do battle treatment resistant depression, but I’m definitely going to see it because it’s about time that major media outlets paid attention! I read great things about it from an article on an Arthritis Foundation page!

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