But You Don’t Look Sick: An Open Letter


[Note: This post was updated on 1/12/2015, upon further reflection of the subject.]

So, I’ve been sick a few more months than when I originally wrote this post. Every single day, I learn more about what it’s like to be chronically ill and live with all of the ups and downs related to my conditions, as they take turns flaring and receding. I wonder if the conditions use some sort of lottery system, but I digress. Anyway, I’ve put some more thought into this post and updated it, hopefully for the benefit of all the sick and healthy people everywhere. As I talk to more people with chronic conditions and see that the perception of what being sick looks like has an impact on more people than just me. It affects so many areas of life for every chronically ill person.

but you don't look sick open letter

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

Categories: Cervical Dystonia, EDS, Sick | Tags: , , , |

30 Comments

  • Caitlin S. | October 9, 2014 | Reply

    So sorry that you have to deal with this. The reality is that people need to realize everyone is dealing with things, and a lot of times it isn’t necessarily visible on the outside. I try to be aware of things I say to people, just because you don’t know what they are struggling with, physically or emotionally.

    I hope you continue to find things that work for you, and hopefully will make it not quite so excruciating.


    • Sarah | October 24, 2014 | Reply

      Thanks! Yeah, I really love that quotation about everyone fighting a great battle. It just hurts when I tell people about my illness, and they doubt my illness. It’s like I can hold it together for a few hours sometimes, but those people never see me when I am crying alone at home. But I never see the same people when they go through their pain.


  • Nina B | October 9, 2014 | Reply

    THIS!


  • Ashlen Mathew | October 9, 2014 | Reply

    I SO hear you on this. I’ve decided not to share much about my medical journey on my blog at the moment, mainly because I’m passively looking for a job and while it SHOULDN’T hurt my chances of getting employment, the reality is that it could. My diagnosis is Primary Hypersomnia or Major Somnolence Disorder. Basically it means I sleep (A LOT….think 12 – 16 hrs a day without the help of medication) and it’s not secondary to another medical condition. Just getting a diagnosis took me all over the country. People would think that I was lazy or unreliable because I was sleeping through everything and there is no alarm clock in the world that can wake me up. Just because you don’t see a problem doesn’t mean that it isn’t there!


    • Sarah | October 24, 2014 | Reply

      I am sorry to hear that! I know how hard it is to get a diagnosis. When I first got sick, I slept a lot, but now the pain keeps me from sleeping at all. Sometimes, even without pain, I can’t sleep. I’m still searching for a diagnosis for that. I am sorry that people think that you’re lazy! It’s the worst. I know that I’m always worried that people will think that I’m flaky for canceling due to illness. It’s like aside from the pain and symptoms, there are so many far-reaching effects, if you try to maintain a normal social life!


  • Rebecca Chapman | October 9, 2014 | Reply

    I’ve heard this so many times as well. Not all pain can be seen whether it’s emotional, or physical, or both. I’m glad you’re helping people to be aware that not all people with chronic illnesses look sick.


    • Sarah | October 24, 2014 | Reply

      Thanks! It’s like, I would never comment to someone who is going through an emotionally hard time that they look so happy, right after they told me how they were in agonizing emotional pain. It’s the same thing–even if they look like they are holding up ok. Everyone can put on a happy face.


  • Mary | October 9, 2014 | Reply

    Though I can’t personally relate to this, it makes perfect sense. I think I might be guilty of doing something similar to this – hard to swallow but good to hear. thanks for being so open.


    • Sarah | October 24, 2014 | Reply

      I am glad to share! It’s like if someone tells me that they are grieving, but then I tell them that they at least look happy. It just doesn’t make sense.


      • Mary-Keith Piasecki | October 24, 2014 | Reply

        that makes sense! When my dad passed away people didn’t know what to say and sometimes they made it worse. makes sense.


  • Amy Simcox | October 15, 2014 | Reply

    Sarah, I thought you might be interested in this: http://goodmenproject.com/featured-content/new-documentary-puts-visibility-invisible-illness-story/ a friend of mine is working on this movie about invisible illness and chronic pain. More than anything, I wanted to share with you because I know you have a passion for spreading the word on invisible illnesses and thought that this movie could further the cause! <3


    • Sarah | October 24, 2014 | Reply

      Thanks for sharing that! What a neat project. There is so much social stigma and misunderstanding. I told someone recently that I left my job due to being sick, and the next question was “what do you do now?” and I was like “… just trying to get better…?” I think that if people don’t have someone in their immediate family, they don’t get it. But maybe one day, through projects like that one, people will!


      • Jamie Danielle | October 27, 2014 | Reply

        I am glad to see that people are working towards education on this topic. I had to leave my job in 2012 when I found out that my psychological disorders mixed with the stress of working in an inner city school had effectively given me cancer. I had so many people not only make inappropriate comments about the fact that I should just “work through it”, but people also felt that it was an open invitation to ask me incredibly intimate questions about what was going on with my body. My struggles do not give people the right to ask for my medical history so they can decide if my decisions are valid in their eyes. I had a hard enough time dealing with the doctors appointments, surgery prep, and the guilt of leaving my students without people telling me that I should put the children first. Hopefully, if these issues are talked about more in public we will see a shift in how those of us that struggle with “invisible” illnesses are treated day-to-day. I absolutely love that you are brave enough to write about this 🙂


        • Sarah | October 29, 2014 | Reply

          Nothing irks me more than “just work through it.” Not only is that a personality-type thing, like some people can thrive on being distracted, but people like me just feel more stressed out. And all of my conditions are exacerbated by stress.
          I can’t imagine people trying to guilt you into staying at a job that was hurting you! Balancing health and work is hard enough–it’s not like people want to give up their jobs that they worked hard to get. I hope you’re doing a little better now!


  • Bets Peterson Hofsommer | October 18, 2014 | Reply

    I have made so much progess in the last 2 years, but every single day is a struggle. Sometimes it’s not worth it to leave the house as I know I’ll make a few enemies in the functional world. Sometimes I run into an old friend and the first thing they say is- You look like you need a sandwich!- Gee, just when my mind wasn’t on my illness, I’m told I need to eat something. Why, because I’m so thin? On a bad day, that same comment feels like a kick while I’m already on the ground. Remarkably, my biggest supporter is an Auschwitz survivor. She’s always telling me how much healthier I look and asks if I’ve gained weight, it shows. (Even tho I haven’t gained an ounce!) It’s so hard for people to look past the norm. I’m not on chemo or other drugs that my friends are and they just don’t understand things they can’t see. Brain lesions take away little parts of one’s function- severe food allergies make living in the average world very non-fuctional.
    All we can do, is the best we can- to use compassion toward strangers- and more importantly, to ourselves. Thanks Sarah for reminding me to, Be Brave Be Brave, Everywhere, Be Brave- We are valuable, we are not broken!


    • Sarah | October 24, 2014 | Reply

      You are so right! We are valuable. It’s about getting better one day at a time. I have the tendency to try to make too many plans in advance, so learning to just focus on what I can do now is important. I really like your point that people don’t understand things that they can’t see. When my Botox shots are keeping my head straight, people really don’t understand. Unless I am shuffling my feet and have my head twisted, people just think I’m ok. They can’t see the pain that it takes to hold my head up!


  • Amanda | October 24, 2014 | Reply

    Thanks for sharing this. I can see how someone (like me) who doesn’t understand would think saying something like “You don’t look sick” would be a compliment. But I completely see how it’s actually insulting and hurtful. You never know what someone else is struggling with behind their appearance.


    • Sarah | October 24, 2014 | Reply

      I can totally understand how people would think it is a compliment and mean it well, but I want to raise awareness. It really hurts me when other people with the same condition tell me that I don’t look sick, especially if they are only basing it on pictures from my blog. In person, I’m not sure how to take it.


  • Gennie | October 27, 2014 | Reply

    I absolutely love this post. It’s so true for people that do not have Cervical Dystonia but have other chronic pain illnesses. You’re very inspirational! 🙂


    • Sarah | October 29, 2014 | Reply

      Thank you! I know that people are trying to compliment me, but it is still painful. Just yesterday, I had a DOCTOR tell me that I don’t look sick, even though I wasn’t even holding my head straight during the appointment. I was having tics right in her office and she couldn’t see them bc of my sweatshirt. And she couldn’t feel my headache and hasn’t seen my seizures at night. So I just wanted to scream! I just politely left and won’t be back.


  • Todd Bello | October 27, 2014 | Reply

    I know they mean well and they don’t mean to insult you. I use to hear a similar so called compliment, “you look good”. Look good what, I look good for having psoriasis. Well, I wanted to turn to them and say but I feel like crap. I know I became hypersensitive because of my condition. Anyway, I love your blog and I can totally relate.


    • Sarah | October 29, 2014 | Reply

      Thanks! Yeah, I know they don’t mean to hurt me, but the words sting. I think the biggest thing is that they never see sick people crying alone at home. My family and close friends understand it, because they’ve seen me totally broken down, but when I do leave the house and interact with people, it’s for short amounts of time. And I also have to put a lot of work into holding my head straight, suppressing tics from my Tourette’s, and hoping that I’m having a good enough day to be able to move my arms above my head to style my hair!


  • Sherry Kay Dyck | October 29, 2014 | Reply

    thank you for this…so very true for both me and my husband. He had to quit work 5 yrs ago and hasn’t qualified for any disability because the docs can’t figure out what is causing his intense chronic heat to toe pain. Then there’s me…just coming off 3 yrs of disability as my church forced me to leave my position there because of the lies they believed re my mental health. I battle major depressive disorder, fibromyalgia, undifferentiated spondyloarthropathy…as well as an emotionally abusive husband with an addiction who I asked to leave for the second time just 2 weeks ago to deal with his issues. We have 2 lovely teen daughters who are experiencing symptoms of USpA (hereditary, no cure, degenerative – like a mix between lupus and rheumatoid arthritis) due to the stress in our life. Longtime friends and a church we have helped start and grow to 1300 have simply abandoned us because they can’t handle the enormity of our invisible struggles. Now my body is literally shutting down (as it has many times in the past) because though I’m mentally well and getting there emotionally the tremendous loss I’ve suffered is making my body shut down. I was in critical condition 2 days ago, rushed by ambulance to emergency as I was completely unresponsive. I am totally aware and can feel and hear everything but my body goes into complete paralysis. I’ve seen specialists, have had extensive tests done and still the docs are baffled. We all agree that stress makes my flare ups of illnesses worse which can affect the body brutally…but we still don’t understand the root of this bizarre thing that happens. The last ER psychiatrist told me he thinks its my heart – not physically but emotionally…I’ve heard of people dying from a broken heart and I now understand what that can look like. But my God is amazing and I have hope and I am trusting Him to provide healing, answers and marriage/family reconciliation. God is good…all the time


  • Sandra Black | October 29, 2014 | Reply

    Amen!


  • Jennifer Dewbury | October 30, 2014 | Reply

    I HEAR YOU SARAH!! Much love and gentle hugs xoxo


  • Kristen K. Dannahey | October 30, 2014 | Reply

    I do not have dystonia, but I too have complicated and interacting chronic pain disorders adobe with a handful of other conditions that cause their own problems. I’m often told I don’t look sick, I’m too young to have so many problems, and have been turned away from every specialist in my state for being too complicated so I have to travel to Boston. An APRN with a heart of gold functions as my PCP, listens to me, researches, cares, and believes. It’s the only reason I have my sanity, I swear. I relate so much to weekday you wrote here. Thank you for that. I get frustrated too that my lack of looking terrible makes others believe that I’m fine now. Sometimes I put on make up or curl my hair or wear a dress! Dresses are non – restrictive, easy, and comfortable and take minimal effort! Make up and doing my hair? Sometimes I need to remind myself that I’m worth pampering. “They” don’t see me on the days I skip a shower, wear gym shorts and a tank all day and skip 2 meals because it’s too much damn energy and pain to get out of bed. “They” see me when I’ve prepared for a good day where I can look like everyone else. Then “they” don’t see me recovering the following few days. I know you can’t understand unless you’ve experienced it, but I often wish pain would be seen. Maybe I’d be taken more seriously.


  • Kaylee | October 30, 2014 | Reply

    Thank you for this, Sarah. I get the “but you don’t look sick” all of the time. I do not have cervical dystonia but I have rheumatoid arthritis, 7 herniated discs in my back and sciatica from the discs pressing on the nerves going to my legs. I always hear “oh, but you look so pretty and healthy” or “you’re way to young to have all of these problems”. Well, yes I may look healthy and pretty and yes I am young (I’m 30) but I’m not making this stuff up. If it were up to me I wouldn’t have to deal with any of this stuff at all. I would be pain free and have a much better quality of life. Those type of comments seem to imply that I’m faking it or that I somehow asked for this to happen to me. I wish you the best in dealing with your painful condition.


  • Robin Wahl | November 8, 2014 | Reply

    Yep, I totally relate Sarah. Gentle hugs~


  • Rebecca Stanley | January 14, 2015 | Reply

    !!! I absolutely love this to pieces! I don’t have dystonia, but still have quite a number of medical issues of my own and am in constsnt pain. I could not have said this better myself. Thank you for sharing this (:


  • Robin Coll | September 30, 2015 | Reply

    Seriously, Sarah, you are brilliant. I thought you should know. I’ve been wanting to say those exact words to my family for a very long time.

    Your letter made me cry, cry for you, for me, for all of us that suffer from Chronic Illness, invisible or not. Sometimes not even those closest to us really see the struggle. I’m very good at hiding from my husband and my grown children until I’m all alone. My family, aside from my husband and children, have all given up on me because I failed yet again to show up at some non official event. If you asked my siblings they couldn’t tell you any of the major conditions I have. It’s all in my head, you see. Or so they tell people.

    It’s been six years and I manage. It’s the best I can do, but for some that’s not enough. In the last two years I gave up all my specialists but the necessary ones and trust that my PCP understands that I cannot hold a hair dryer or a brush long enough to do my hair. Danskin (I am so thankful for athletic wear) is the brand most found in my drawers and closets. I manage day by day. I play with my makeup as a hobby, craft, etc. and on a good day I can’t go 10 min without someone saying “You must be better, you look healthy”, or “Wow, you’re so talented, you should do this as a job” – like living in pain everyday one after another and barely staying awake isn’t job enough. My husband is my rock, I sincerely hope you have a rock too.

    Thank you for saying what I havent been able to.

    Robin Coll
    Gastroparesis, Narcolepsy, REM SBD, Fibromyalgia, C Spine Nerve Impingement, Chronic Migraines with Aura, and list goes on . . .


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