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: |

15 Comments

  • lesley | April 14, 2014 | Reply

    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


    • Sarah Farris | April 15, 2014 | Reply

      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.


  • Lindsey | April 14, 2014 | Reply

    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!


    • Sarah Farris | April 15, 2014 | Reply

      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!


  • Kristin Filut | April 15, 2014 | Reply

    How overwhelming! Sending hugs and comfort!


  • Martina @ snapshotsandwhatnots | April 15, 2014 | Reply

    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


    • Sarah Farris | April 16, 2014 | Reply

      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 | April 16, 2014 | Reply

    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.


    • Sarah Farris | April 16, 2014 | Reply

      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.


  • Seriously, Sarah? | September 11, 2014 | Reply

    […] blogged a lot about invisible illnesses in the past, but since this week is National Invisible Illness Awareness Week, I thought that I […]


  • Kenz @ Life According to Kenz | January 13, 2015 | Reply

    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. 🙂


    • Sarah @ Seriously, Sarah? | January 13, 2015 | Reply

      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!


  • But You Don't Look Sick: An Open Letter (Updated) - Seriously, Sarah?Seriously, Sarah? | January 16, 2015 | Reply

    […] Related Posts: Rethinking Hospitality (for the Chronically Ill) Cervical Dystonia Managing Cervical Dystonia Pain Invisible Illness […]


  • Diagnosis Dystonia: Why You Should Consider Botox for Cervical Dystonia - Seriously, Sarah?Seriously, Sarah? | January 16, 2015 | Reply

    […] Invisible Illness […]


  • But You Don't Look Sick: An Open Letter - Seriously, Sarah?Seriously, Sarah? | January 29, 2016 | Reply

    […] Hi there, You may have just met me. You might be my good friend. You might even be my family member. I just wanted to take a moment to talk to you about the phrase "you don't look sick." You know what, you've never seen me at home alone. So, yeah, I don't look sick right at this second. To borrow a phrase from the ever wonderful writer Ariane, my pants should not have to match my pain level. Sometimes, putting on a dress helps my mood, even if it doesn't help my pain. I'm sorry if that conflicts with your idea of looking sick. I don't mean to sound ungrateful for what you mean as a compliment, but it is kind of insulting. The phrase you don't look sick minimizes and dismisses my pain. So, if we just met, and I opened up to you about my painful neurological condition (and I didn't even mention the other conditions with which I live), please don't think you're complimenting me. If you follow it up with "but you're so beautiful," you are unknowingly implying that being sick should make me ugly. Maybe you think I'm exaggerating my pain because you perceive me as beautiful. Beauty fades, but my pain won't. This letter is not about only me, either. By telling me that I don’t look sick and that I’m beautiful, you are reinforcing the idea that if anyone wants his or her medical conditions taken seriously she should look a certain way. Maybe I should not take any pride in my appearance if I am sick, so your conceptions of illness and my illness will fit together. The preconceived notions of what being chronically ill looks like is what prevents people from seeking the medical attention that they need, receiving the benefits that they deserve, and being treated with dignity. There are people who cannot even get the much needed family support during their illnesses because their families do not understand that being sick can present in many different ways. Sick looks different for different people on different days. I would like you to know that it probably took me twice as long to look passable for public viewing than it did before I got sick. Instead of wearing contacts, styling my hair, putting on make up, and wearing an outfit that isn't entirely from the "active wear" department absolutely every day, like I did in the past, I only do that once or twice a month. [Side note: We can talk about the irony of wearing active wear in my condition later.] You don't see me at home. You don't see me the way my family does. My situation is so excruciatingly embarrassing that even my doctors do not see all of the pain. My mask is reinforced by years of negative experiences with showing vulnerability. I dread necessary doctors’ appointments because I know that it will mean that I have to take a shower with energy that I do not have. I only let you see what I want you to see because you would be uncomfortable with the truth. Plus, I do not want to be humiliated. I want to be treated with dignity. So, I only leave my house when I can be presentable, which is not often. Therefore, I become isolated and lonely because I don’t have energy to make myself look like my former self. There should not be any stigma when I can’t wash my hair because I am that sick, but there is judgement because you can’t see my whole story in a glance. That’s why you only see me when I don’t look sick. If you are another person with Dystonia, I feel really bad for you. We share a common bond, which I thought you would appreciate. But when you tell me that I don't look like I have Dystonia, just because Botox helps me to hold my head straight for 8 out of every 12 weeks, you are insulting me, too. I am sorry if Botox doesn't help you hold your head straight, but I experience life altering pain, just like you. I also want to take a minute to address a few more problems with the phrase you don't look sick. You may know about my illness from my blog or from me telling you about it. Either way, neither on my blog or in conversation, do I lay out my entire medical history. I can't even explain it all to a single doctor during an hour long visit, even if I bring notes and timeline. I don't tell you about the hours and money that have gone into biofeedback and neurofeedback, the tests that I've had run, and all the extra things that I require to maintain a manageable pain level. I'll never tell you how many doctor visits that I average a week or how many pills that I've tried and had horrible side effects or allergic reactions. I won't tell you about the pain of when the doctors don't know what to do with you — yes, I have been turned away by primary care doctors because I'm too complicated — they either throw a lot of pills at me or they take their frustrations out on me by yelling at me. It may sound crazy to you, but you probably only see the doctor when you have a sinus infection. So, in addition to dealing with pain and being sick, I deal with more frustrations than you could ever imagine. When I first got sick and didn't understand why the doctors were yelling at me, it felt like I was slowly losing my sanity. That makes me feel even worse. So maybe I brush my hair and try to look ok when I leave the house, but I carry so much pain behind the facade. When I hold my head straight really quickly, so someone can take a picture, because I'm wearing makeup and plucked my eyebrows for the first time in two months, don't think that's my everyday experience. I go out of my way to document the moments that I can enjoy life, so when everyone else is living life, and I am alone in the recliner, I can see some evidence of that one time I enjoyed playing with my dogs at my grandparents' house. So, I if you're a close friend or family member, I appreciate it when you tell me that my voice sounds strong or notice an improvement in my symptoms. But, if I don't know you or you don't think I look sick, you aren't complimenting me. Thanks, Sarah Related Posts: Rethinking Hospitality (for the Chronically Ill) Cervical Dystonia Managing Cervical Dystonia Pain Invisible Illness […]


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