But You Don’t Look Sick: An Open Letter (Updated)

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.

You Don't Look Sick: An Open Letter- I originally published my open letter back in October. Since then, I have thought more about how invisible illness affects more people than just me. So, I've rewritten the original post to talk more about how the assumption of what illness looks like has a broad reaching effect in the areas of support (both emotional and financial), treatment with dignity, and access to medical care. Check out my new thoughts on how the phrase "you don't look sick" can hurt someone and generally does a disservice to everyone who suffers from an invisible illness. It is time to reassess what chronic pain and chronic illness looks like in our society, so that people can receive the necessary medical attention. #spoonie #chronicpain #chronicillness #invisibleilness #fibromyalgia #POTS #CFS #depression #ptsd #dystonia #dystoniaawareness #notalone

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 messes up 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 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.



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

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Categories: Cervical Dystonia | Tags: , , |
  • Wow. I relate to this so much. And I appreciate you writing it because you put my exact thoughts and experiences into words better than I ever could. On a near daily basis, I look like utter crap. Taking a shower is like going into battle for me. I can literally have seizures from getting too hot. Do healthy people worry about that when they are getting ready for work or school or social events? I doubt it. The only time I actually even really dress up are the rare trips to Wal-Mart or to the doctor. And because I have my mask on–like you said–not even my doctors actually know how sick I really am most of the time. Even when people have visited me on the days where I’ve just vomited in my hair or am having a migraine, the next time they see me they’ll say that awful, awful phrase. I have to pinch my face up because as many times as I’ve told them that I go through a cycle of good and bad days, it’s like the guys from Men in Black came and wiped out their memories of seeing me sick. What is up with that, I have no idea.

    • Oh, I am so sorry to hear about the seizures. I was advised to avoid hot baths and showers, but a hot bath is the only way that I can relieve my myofascial pain in my back, unless I can get in with my pain specialist for trigger point shots. And getting that appointment and getting there is still super difficult. You are exactly right about healthy people not having to worry. I used to be like, “Oh, yay! I’ll wear my cute new dress to that cheese and wine night.” Now I am like (if I even get invited anymore) “I can’t come.” And then I put on make up, just to improve my mood and feel good about myself if I decide to accompany my husband to Walmart. Because I can’t lift groceries! I don’t dress up or put on make up for the doctor anymore because I have a hard enough time letting my guard down, so I try to let my clothes and body posture do it for me.
      Men in Black! Yes! Hahahaha. I can’t even count the number of times I literally shuffled my feet while leaving work early because I got sick, yet I had to deal with a ton of issues about if I was really all that sick. (Well, I did just throw up from pain in the bathroom… had to move my desk because I cried all of the time, etc).

  • Great update on this! I think so many people can relate. So many chronic medical conditions cause so much torment that can’t be seen. I realize people are trying to be kind by saying they think we look good even when we don’t feel great, but you’re right, it points to the bigger issue that people cannot always understand what they cannot see. Even those closest too us don’t always know the extent of what we go though because we put on a brave face. And there’s an empowering strength to that. You are doing good things, Sarah!

    • Yep! My first post was written in frustration, but then I realized that it’s really a huge problem with society at large, especially in the medical community and with people who are in positions to provide financial or emotional assistance. I feel like someone with a well known disease or who looks sick gets help first.

  • Pingback: But You Don’t Look Sick – A Reflection by Dystonia Health Activist, Sarah | WEGO Health Blog()

  • FibroWorks

    Thank you for writing this! So many times, I’ve “dressed up” to go to a doctor’s appointment (that’s how I was raised, you’re supposed to look nice for professional appointments), only to be looked at and told nothing is wrong with me, laughed at, or “dissed”. If they only knew what it took for me to get ready for that appointment, particularly if it is scheduled in the morning!

    • I know! I have to calibrate my clothing choices to properly convey my pain level! It’s like you dress for the job you want during a job interview, so you have to dress in a way that conveys how sick you are, so that the doctor will believe you! I was raised the exact same way. I only take morning appointments if that’s all I can get. I have to plan to shower the night before, lay out my clothes, and work very hard!

  • Illness doesn’t always show visible symptoms and many people just won’t understand that unless they have to deal with it themselves. Maybe it’s worth educating them and maybe we should take their comment with a grain of salt and move on. I think it’s nice to have a group of supportive people who struggle with their own chronic illnesses. Even though they might not understand exactly what you are going through, they can can offer encouragement and empathy because they know the struggle. Great article – thanks for sharing!

    • Thanks Lecy! I don’t expect to change the world. I just think that awareness is important because, like other people have mentioned, if you are perceived by doctors and the people who determine disability benefits as being well just because you don’t fit their idea of what a sick person looks like, then there is a huge problem. It would be nice if everyone understood, but when even doctors don’t get it, the problem is indicative of a massive problem within our culture.
      People, like me, become isolated because they can’t live up to their previous standards of looking well, so they are only seen in public when they look healthy. Most illnesses that I’m talking about have good day and bad days. So, yes, I could move on, but it’s a pervasive attitude that if someone doesn’t look “sick,” then they aren’t sick.
      And really, I don’t think we all want people to bend over backwards because we say we’re sick or anything, but I’ve talked with so many people who are mistreated by their own families because they are perceived as lazy, when they are the ones who are sick and need help. Dystonia, for instance, is insanely painful. It’s even visible when it is left untreated, yet, people don’t know what it is, so they think that their family member is just a lazy person with an aching neck. It just needs to be discussed and put out there for public discussion.

  • i really appreciate you sharing this so openly and candidly. i’m a new reader and feel strong empathy for what you must go through on a daily basis-you are a strong woman! i remember hearing a quote along the lines of “your words aren’t about how they were intended to be heard but how they are received” and this speaks to that truth.

    • Thanks, Chelsea! I really like that quote. I think it is great for writers to think about before they write anything. (I’m working on a series about being a responsible blogger, and that rings so true).

  • this is so rich. not only because it applies in cases of physical pain, but because my dad looked “healthy” when he wasn’t because his brain was disappearing and that doesn’t render any physical issues until late in the game. it was so hard to go out to dinner with him and have him order something that is ABSOLUTELY not on the menu, and have to try to grant him dignity, while give the waiter a hint of what’s going on. yes, he didn’t look sick, but oh how sick he was. it’s such a challenging place to be, such a difficult conversation to navigate (ALWAYS), such a scary balance to try and keep. BUT, you’re enriching lives with your story and your openness, so there’s that for you. 🙂

    • Amber, I actually never even considered how this would apply to people like your father. I did think about mental illness, but those can sometimes be apparent in the way that people behave. Mostly, I was thinking about invisible physical pain, but that’s just another whole group of people who need to be understood.

  • Natalie Carlson Brown

    Thank-you for putting into words what I haven’t been able to in the 16 years I’ve suffered with chronic illness’. 🙂

    • I am so glad that these words resonated with you. Since we don’t always look sick, we can’t even identify each other!

  • Stacey

    I have had this battle for about 15 years. Have had doctors tell me, I can’t help you or there’s nothing wrong with you and even I refuse to give you pills. Because really, all I wanted was to get high and not have a doctor really do their job and figure out what was wrong with me. Two years, tons of pain, buckets of tears and almost completely losing my sanity, I was finally diagnosed. Thank you for sharing this. I know other people have cervical dystonia, but feeling alone in the everyday battle is real. I thank God everyday for my wonderful husband who never once left my side. And botox really does help. I am living almost a normal life but the pain never leaves. It just becomes part of you and who you are. Thank you again for sharing your story. I really do understand and know this life. Sincerely, Stacey in Wyoming

    • I am so sorry to hear that! It is just like you say, it can be isolating, even if you know other people or are surrounded by people. Like you, I also don’t know what I would do without my husband. He even knew he was sick when he met me. I just got worse over time.
      I wish more doctors would understand that Botox helps, but the pain doesn’t leave. There are always muscles knots in the rest of my back, caused by the imbalance in my muscles, and the muscles that are trying to over-compensate. I live with so many tension headaches, have a hard time with range of motion because of the tension, etc. Botox makes it better, but it’s not perfect!
      And it is a huge part of who you are, which makes it hard to relate to other people. I used to be the person who could talk to every single person at a party, had tons of friends, and just a lot going on. But, like you said, the pain changes you, and while I long for how I used to live, I can’t bring myself to just make chit-chat.
      Thank you for your comment!

  • Cathy Chester

    We are on the same wavelength. This is something I’ve written about as well. Loved reading your version! Yup. Meant as a compliment but not taken that way. The answer? Education and awareness. Great job.

  • Laura Luke LeBlanc

    Oh boy…this rings a bell as well. And I do look totally normal. I’m lucky in that way, but in some ways I wish my pain would show now and then. Sometimes I wonder if people are thinking “Ohh, here goes Laura again with her headaches…” This is not normal pain, people! And no, yoga doesn’t help!!