A lot of information comes up when you Google “fibromyalgia” — associated symptoms, treatment options and the like. It’s probably similar to what a doctor might tell someone recently diagnosed. But a lot goes unmentioned — things you might not know unless you have fibromyalgia or love someone who does. And even then, as is true with many chronic illnesses, there are things people who have it just don’t talk about.

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We asked people with fibromyalgia in our community to share one thing not often talked about when it comes to having this disease. Every answer offers more insight into this misunderstood illness — and hopefully increases awareness and advocacy in the process.

1. “There’s a lack of knowledge about fibromyalgia in the medical community.” — Kayleigh May Meek

Blurred photo of stethoscope with the text: "There is a lack of knowledge about fibromyalgia in the medical community."

2. “It can negatively effect a person’s sex life and relationship issues may arise because of this. I have found this to be the most isolating part of the diagnosis.” — Alison Taylor

3. “It is so much more than having to accept not feeling good or having to take medication. Regardless of interest or motivation, it cuts down on your life and what you can do, and what goals you can set and ultimately changes how you see yourself.” — Mary Lynne Mountjoy

4. “It is a real chronic illness. It is not something doctors tell patients just because they do not know what the true problem is.” — Lexi Potter

Hands holding clouds with the text: “It is a real chronic illness. It is not something doctors tell patients just because they do not know what the true problem is."

5. “There will be pain even after treatment and lifestyle changes. It is chronic pain. It can be managed but not cured. Flare-ups will occur like a surprise smack in the face.” — Nikki Albert

6. “It impacts your ability to follow your career dreams, to interact the way you want to with your children.” — Stacy Schofield Adkins

7. “Fibromyalgia doesn’t play fair. The physically stronger people don’t overcome, unfortunately. You have to become smarter and learn your limits.” — Julie Garver

8. “It is a progressive illness and seems to get worse every year for me. Plus so much gets blamed on it once you get a diagnosis that other problems that actually aren’t the fibromyalgia get missed.” — Janet Secord

9. “Fibromyalgia is different for different people. My fibro means my feet often feel like they’re burning and I have to use ice-packs on them, but my friend with fibro always has freezing cold feet and has to wear thick, warm socks and use warm foot baths. The only similarity is that neither of us regulate or own body temperature very well. This isn’t a one-size-fits-all diagnosis, and there isn’t a one-size-fits-all treatment.” — Joanne Purewal

Four figs on a wooden table with the text: "This isn't a one-size-fits-all diagnosis, and there isn't a one-size-fits-all treatment."

10. “No one talks about the stress it puts on relationships. The inability to be able to do the things you love, as well as keeping the house clean.” — Echo Shifley

11. “The fear. It is incredibly scary to be diagnosed with a disease that half the medical profession doesn’t believe in, doesn’t know what causes it and doesn’t know how to fix it. It’s really scary not to be in control of your own body. I have no idea why it does half the things it does. The scariest thing is I never know if my symptoms are fibro or something more sinister. I’m very scared that one day they will discover something terrible that has been explained away by fibro.” — Kathleen Hughes

12. “Pain and fatigue is just the tip of the iceberg. It affects literally everything!” — Winifred Kakouris

13. “It is so unpredictable. One day I can be feeling pretty OK and actually get a few things done, and the next day I’ll wake up feeling like I got hit by a truck. Some days I need a cane, some days I need a walker, some days I can’t even get out of bed.” — Vanessa Blevins

14. “Family and friends don’t seem to understand the emotional impact fibro has on my life… how much depression and anxiety being in constant pain brings. I can’t just snap out of it. I literally mourn the loss of my former self.” — Terri Brown-Watson

15. “It takes energy to move through the pain and fog to be productive. So many compromises all through the day. If I shovel the walk will I be able to prepare dinner? Will my children manage if a play with them for two hours then need to sleep four hours?” — Judith Brain

16. “It can be isolating and utterly devastating to have everyone not believe you. It’s soul crushing to be told, ‘It’s all in your head’ and that your pain is not valid. — Katie Andersen

17. “Having fibro is a roller coaster ride. I don’t ever know what’s coming next, and the emotions that come with it — well, that’s just overwhelming at times.” — Amy Reilly

18. “You may have guilt over not being able to do all the things you need and want to do every day. It’s crushing and one of the main reasons I feel so depressed.” — Jennifer Leigh Brown

19. “No matter how hard you try to relax, sometimes your muscles just won’t.” — Brandy Bowie Fallon

Feet hanging over the side of a couch with the text: “No matter how hard you try to relax, sometimes your muscles just won’t.” — Brandy Bowie Fallon

20. “Of those living with fibro, approximately 90 percent are women. There absolutely should be the deliberate and scientific presence of a gender bias that brings new insight into women’s health and treatment, while confronting this disease. Instead, there is often a sexist cultural gender bias at work in confronting, and undermining, the women who live with it.” — Arria Deepwater

21. “No one talks about how often we force ourselves to do things we really don’t want to do, only because we get tired of seeing the look of disappointment in the eyes of others.” — Lin WallBonn

22. “It’s hard to balance earning a living, what friends expect of you, your own expectations, and your family responsibilities without triggering a flare.” — Karen Glorsky Epstein

23. “No one talks about how many times you’ll hear that ‘it’s all in your head.’ That ‘no one can be that sick.’ No one tells you how people will leave your life because they can’t handle it.” — Katherine Herrmann

24. “It affects your family. My mom suffers from fibro. I can recall many instances when I was younger thinking to myself, ‘Why can’t my mom just be like other moms and do cool, fun stuff.’ Now 12 years later I’m married and have kids, and I am just now realizing she did everything she could to store up energy for one good day out of every 15 to 20 days just for her kids. I can’t sit back and say I didn’t notice a difference in my childhood because of fibro because I did. What I can say is I’ve learned the meaning of loving sacrifice from it.” — Ana Tomson

*Some answers have been shortened for brevity and clarity.

What would you add to this list? Share with us in the comments section below.

 24 Things No One Talks About When It Comes to Having Fibromyalgia


Fourteen. When you think back on your teenage years, 14 is supposed to be a time of self-discovery and mostly exciting new things. You probably don’t imagine it’ll be the year your life changes forever.

For me, 14 was when I went from an active, happy, straight-A student to a version of myself I could never recognize. Everything changed almost instantly. I couldn’t focus on my homework. I couldn’t stand being outside in the heat (not good when you live in Florida). I was always in pain. I knew in my gut there was something wrong with me. I had no idea what it would turn into. I told my mom I always felt sick and I needed to go the doctor. Little did I know this would start a four-year process that’s still ongoing. After years of endless doctors’ appointments, painful tests, tears and lots of frustration, I learned I have fibromyalgia/central sensitization syndrome, as well as a form of autonomic dysfunction called postural orthostatic tachycardia syndrome (POTS).

Fast-forward to sophomore year of high school. I struggled daily to get up and go to school. Some days I’d black out trying to get ready, then go and suffer through the day and even push through three-hour marching band practices because I refused to give up on my music. Then other days, I never even made it out of bed. I spent so much time being angry at the world and disappointed in myself, sometimes questioning if the doctors who dismissed me were right.

It was so hard to be in high school watching everybody around me thrive and enjoy what some say are the best years of your life, while I was spending all of my time in bed or at the doctor. I spent so much time feeling bitter and questioning why it had to happen to me. I was in an emotionally agonizing state, and one day I realized I was only hurting myself more. I’ll be honest, it took four years and a lot of time evaluating myself and my life to come to this point, but here are just a few important things that being a chronically ill teenager taught me.

1. It taught me to be patient: patient with the people in my life supporting me (love you, Mom), patient with the strangers who don’t understand, and more importantly, patient with myself. I spent so much time getting angry and impatient with my body and my limitations, and then I realized I was my own harshest critic. Part of being ill is accepting the reality of the challenges you face and the things you can and can’t do. Say it out loud: “It’s OK to not do everything.”

2. It taught me to be wise beyond my years. While everybody around me was focusing on prom, the “it” couples of our school and the small stuff, I was looking ahead at my future. Having to be more responsible for my body and my health made high school drama completely unimportant. It gave me a perspective that took many years for some other people my age to get.

3. It taught me I was extremely resilient. By definition, resilient means “able to recoil or spring back into shape after bending, stretching or being compressed; able to withstand or recover quickly from difficult conditions.” This really hits home for me. When you think of yourself as sick, it can be easy to see yourself as weak, when in reality it takes an immense amount of strength to handle the things you face with chronic illnesses. You may never know what your illness is going to throw at you next, but each time you get up and you bounce back.

4. It taught me not to be so hard on myself. It was such a freeing feeling to look back and realize that even though there may be areas where I feel I fall short, I get up every day and I fight my illnesses with everything I have, and that is something to be proud of. You have a choice to make — you can either stop fighting and accept that your life isn’t going to be what you want it to be and fall victim to your disease (I did this for a while at first), or you get up. You push yourself to the boundaries you set for yourself, and you fight every day and make sure to celebrate the victories more than you mourn the losses.

Teenage years are a time of growth, and while I still wish I was healthier, I’m choosing to be thankful because I learned things about myself and grew up to have an outlook and perspective on life I may never have gotten otherwise. Thanks to my illness, I’m compassionate, I’m a fighter and I’m able to appreciate things that may never have mattered much to me 10 years ago.

I believe every situation you face in life can have an upside. You just have to be patient and find it. It’s amazing how much better you’ll feel when you do.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

Fibromyalgia affects an estimated 10 million people in the United States, and symptoms include fatigue, pain and problems with cognitive functioning (aka “fibro fog”). These symptoms can vary from day to day and person to person, making the chronic disorder notoriously difficult to diagnose.

While fibromyalgia can be frustrating, the online communities for those with fibro (and others with chronic illnesses who identify as “spoonies“) are strong. We’ve noticed a number of individuals sharing their personal stories on social media, and among other things, photos of tattoos that symbolize their experience with fibro. The butterfly and the purple ribbon are the most commonly recognized symbols for fibromyalgia.

We teamed up with the National Fibromyalgia Association and asked their Facebook community to show us their fibro-inspired tattoos — and tell us a little bit about why they got them.

Here’s what they shared with us:

1. “I was diagnosed at 16, and got my spoon tattoo on my 18th birthday. The tattoo is inspired by ButYouDontLookSick.com‘s spoon theory. It is my way of always having an extra spoon on days where I feel like I need one. My older sister is on the left, and she got the tattoo in support of me. It’s her way of having an extra spoon for me when mine still isn’t enough.” –Gabby Bennett

Spoon tattoos

2. “My daughter and I both have the same tattoo on our arm because we both have had fibro for many years. The butterfly represents fibromyalgia with the purple color but also the saying reminds us that although every day is a struggle, life is still beautiful and we will get through one day at a time.” —Monique de Kroon

Fibromyalgia tattoo "Life is a beautiful struggle"

3. “This is my daily reminder to get out of bed and give it my all. Even when I’m having the worst day. This tat also serves a dual purpose. The body of the butterfly is a semicolon for suicide prevention and awareness.” —Hailey Alexander Jones

Fibromyalgia tattoo with butterfly

4. “About two years ago I had been thinking about how I wanted to embrace knowing I have fibromyalgia and a tattoo came to mind. I explained to the artist what and why I was doing this, and he completely understood. Knowing that it takes so much to spread our wings daily to get through the day. I’m reminded when I look at my tattoo quite often that I’m not alone.” —Kelly Michael Loague

Fibromyalgia tattoo of butterfly

5. “I got my tattoo after being diagnosed with celiac disease, and going through a rough patch emotionally and physically with all types of symptoms which oddly overlap with fibromyalgia. I wanted to remind myself to be brave and strong. I got my version of a Thunderbird. Now, that I have a fibromyalgia diagnosis, too, it’s just an even better reminder to get up and get going. You can do this.” —Tracy L Terry

Fibromyalgia tattoo on leg

6. “Got it for being a domestic violence survivor. I didn’t know it was for fibro too until I was diagnosed.” —Ann Ward Reid

fibromyalgia tattoo of ribbon

7. “I recently got this feather on my foot that reads, ‘strength lies within.’ It is a daily reminder for me that I have the inner strength to carry on every day despite whatever pain I maybe in. I never thought I would ever get a tattoo, but I love it, and after the pain fibro puts me in I was not worried about the pain of getting it done.” —Jessica Shaw

Fibromyalgia tattoo on foot

8. “I will win.” —Jacqueline Lynn Drummond

Fibromyalgia tattoo "i will win"

9. “When having a bad day I just look at it, and it makes me feel positive again.” —Lisa Marshall-Hill

Fibromyalgia tattoos "live laugh love"

10. “My daily reminder that I’m a warrior and will not give up for this horrible condition and will keep fighting.” —Monica Rodriguez-Zavala

Fibromyalgia tattoos

11. “This is my snow leopard to remind me of how agile and graceful I once was and how lucky I was before this kicked in. It also represents the determination of how difficult is to survive the hard times, and a leopard never changes its spots; I’m still me.” —Brenda Butcher

Fibromyalgia tattoos


Fibromyalgia tattoo

via Thea Friemund


Fibromyalgia tattoo

via Monica Moore

14. “This is a watercolor poppy — for my mum. It was after her death that I was diagnosed with fibro. A poppy for remembrance.” —Merrily Hall 

Fibromyalgia tattoo


Fibromyalgia tattoo

via NoeLani Atken


Fibromyalgia tattoo

via Lisa Colby


Fibromyalgia tattoo

via Emma Svensson



via Chris Bye


Fibromyalgia tattoo

via Katy Kelley

20.  “All the depression before my diagnosis had me inpatient several times, so I have the serenity prayer.” —Jackie Nobert Robinson

Fibromyalgia tattoos

21. “My wings.” —Sarah Mackenzie

Fibromyalgia tattoos

22. “My purple ribbon is for fibromyalgia and Chiari malformation.” —Christine Ewing

Fibromyalgia tattoo

23. “It also helped to ease my pain.” —Shannon Patterson Eckholt

Fibromyalgia tattoos


Fibromyalgia tattoo "hope"

via Amelia Melissa Norris

*Some answers have been edited for brevity and clarity.

Do you have a fibromyalgia-inspired tattoo? Share it with us in the comments below or email it to us at [email protected]

For more information, be sure to visit the National Fibromyalgia Association’s website and Facebook page.

I have a chronic illness

Those words are still difficult to say.  

I have lived with fibromyalgia for over six years. The road to my diagnosis was complicated, as it is for many people. I was always exhausted and always in pain, and it had become obvious this wasn’t “normal” for a 26-year-old.  

After going through a bunch of testing and ruling out everything else possible, I was given a name for my condition. I was also told medicine was an option “if things got too bad.” I said “No, thank you, I can manage” and went on my way. 

I didn’t want to be seen as weak. What doesn’t kill you makes you stronger, right?! And this wasn’t something that would kill me; it would just be uncomfortable. I could deal with that. Nobody had to know. I was tough. 

Eventually, though, some people did have to know. So I told those closest to me. I told them I had this thing called fibromyalgia, and sometimes it made me extra tired, and sometimes it made things hurt that wouldn’t normally hurt somebody. 

I left out the part about how on any given day it could be a massive struggle just to get out of bed because I felt like I had just slept with every muscle in my body clenched as tightly as possible, and it hurt. Or how when I had a flare, I honestly could not even lift my arms above my shoulders because they felt like they weighed 100 pounds each. Or how I couldn’t remember the last time my body was actually relaxed because my nerves are always sending messages to my muscles to tighten up. 

I didn’t want people to think I was complaining. I didn’t want pity, and I knew they wouldn’t understand. How could they? They weren’t inside my body! 

I even downplayed my symptoms to my doctors: “Yes, I have fibromyalgia, but I’m doing great with it!” Honestly, it was making me miserable. But I couldn’t do anything to change my situation, so I was dealing with it. 

Or was I? 

After five years of living like this, I finally realized I could do something to change my situation. I could accept my diagnosis. Like, really accept it. Realize I now have limitations I don’t always like, but that doesn’t mean I am weak.  That there are things I can no longer do, but there are plenty of things I still can do. That there are times I am going to have to tell people no, or ask others for help, and that is OK. 

Most of all, I needed to be honest. With myself, with my family and friends, and with the universe at large. And by being honest, by listening to my body and doing what it needed, I was taking charge and living my life on my terms as much as I could. 

And then I realized by talking about what I was going through, I could help others understand they are not alone. It isn’t about complaining, it isn’t about whining. It’s about opening up and being real with both my struggles and my successes. And hopefully inspiring others to do the same. We can all help each other.

Follow this journey on Happiness Through the Fog.

In an ideal world, every doctor would have an immediate understanding of a patient’s medical history, symptoms and everything he or she goes through. Of course, that’s not exactly realistic (doctors are only human, after all), but there is always room to learn more about the patient experience.

We asked people with fibromyalgia in the National Fibromyalgia Association’s Facebook community and our own Mighty Facebook community the following question: what’s one thing you wish doctors knew or better understood about fibromyalgia? After receiving more than 1500 responses, it’s clear there is a lot to be learned.

Here’s where we can start:

1. “The true depth of the pain and fatigue. You can describe it all day long, but until they’ve felt it for themselves, they cannot truly understand.” — Beverly Surber

2. “Every day is a struggle. The pain is real. The exhaustion is real. The depression is real.” — Dawn Politte Patchell

3. “It is not just debilitating pain and fatigue, which is bad enough. It is an overwhelming feeling of being unwell in every way.” — Christine Mercer

4. “I wish they’d stop telling me exercise will help because I’ve tried, and it only makes me worse or more fatigued.” — Shirley Baggaley

5. “I am more educated about my illness than their typical patients… Doctors need to know us fibrofolks tend to be better educated on fibro than they are.” — Amy Jordan-Meeves

Doctors need to know us fibrofolks tend to be better educated on fibro than they are

6. “I wish doctors understood that I don’t enjoy taking prescription pain medication. I would love nothing more than to go even a day without taking any pain medicine, even over-the-counter. Pain medicine isn’t fun for me. It makes me nauseated, dizzy, shaky. I hate it.” — Sandi DiMarco

Pain medicine isn't fun for me

7. “One person’s fibromyalgia is not another person’s fibromyalgia. I believe each of us deals with our own pain and symptoms.” — Laura Spradlin Hamilton

One person's fibromyalgia is not another person's fibromyalgia. I believe each of us deals with our own pain and symptoms.

8. “I’d like for the fibromyalgia stereotype to disappear. I don’t tell everyone I have fibro because the stigma can be so bad. There are a lot of doctors and nurses who will completely dismiss you as soon as you say fibromyalgia.” — Amanda Harris Velez

9. “Fibromyalgia is like a chameleon. The longer I’ve had it, the more it changes almost daily. Just when I think, aha, I got this, symptoms change.” — Marlene Goulden

10. “I would like them to know we are not drug seekers!” — Stacy Reyes

We are not drug seekers!

11. “I wish they knew what actually caused fibromyalgia so there is a better chance of curing it.” — Jill Splettstoeszer Erickson

12. “There are no pain-free days.” — Tracy L Terry

13. “It is an invisible unless. I might look fine on the outside but be in debilitating pain on the inside.” — Niki Everette

14. “I wish doctors would fight for us to have fibro and/or chronic pain included on every medical marijuana program in every state.” — Christine Hasenauer

15. “I wish they could figure out what causes fibro fog and the true effect it has on fibromyalgia sufferers.” — James N Surrells

16. “The pain can be so intolerable; it affects your quality of life, causing frustration and anger. However, when someone finds a medication that works, and it provides a better quality of life for an individual, but they are denied access to it, it causes stress and exacerbates the pain. Even when access is given, there is always fear that what is working will be taken away from you.” — Leslie Jones

17. “Fibromyalgia does not care how old or young you are. I’m 28 and was diagnosed at 22. It’s sad and discouraging how many doctors have said to my face, ‘Oh, but you are so young!’ As if that would miraculously make me better.” — Ashlen Bones

18. “It’s possible that not every symptom, other than pain, is due to fibro! Stop labeling everything as fibro-related and look at causations, not just symptoms.” — Dawn Kordelewski

19. “It’s so much more than pain and fatigue. Fibro affects every system in my body!” — Jeannie Mar

20. “The 1-10 pain chart doesn’t really apply to fibro patients because we hurt all the time.” — Lisa Edmonds

The 1-10 pain chart doesn't really apply to fibro patients

21. “Not just for fibromyalgia, but with any illness, I wish more doctors knew their limitations and were humble enough to say, ‘I don’t know enough about your condition, but I will either work to learn more or refer you to another doctor to make sure you are getting the best possible care.’ Too often, I see doctors replacing ‘I don’t know what to do’ with ‘There’s nothing wrong.’” — Missie Crisp

"I wish more doctors know their limitations and were humble enough to say, 'I don't know enough about your condition, but I will either work to learn more or refer you to another doctor to make sure you are getting the best possible care'"

22. “Yes, everything hurts. Not just one part of me, everything.” — Melissa Warburton

23. “I wish they understood how hard it was for me to go to them in the first place. I wish they knew how much I don’t want to be in their office again.” — Rose Dupree

I wish they understood how hard it was for me to go to them in the first place

24. “One size does not fit all where this condition is concerned. One case is not like another, and one day is not like another for the same person.” — Laurel DenHartog

25. “Pain is just one aspect of fibro. Please ask me about the other aspects, too. When they don’t ask, I feel like the other parts don’t matter, but for me, they are bigger issues than the pain.” — Martha Katz

26. “It is not all in my head. It is from my hips up to the top of my head, in fact!” — Alayne Stewart Langford

27. “It leaves me exhausted. I think to some extent doctors understand the pain, the shaking, the headaches. But I have yet to meet a doctor who truly understands the tear-inducing, blurred-vision-causing weariness. The 16-hours-of-sleep-and-still-tired exhaustion.” — Sheila Capps

28. “I am never not in pain. When I say I’m doing well, it means the pain is at a level I’ve learned to live with, not that it’s gone or good.” — Julia Moore

29. “I wish my doctors were better able to understand and help with my brain fog. I feel as though, cognitively, I have declined significantly over the years. This scares me, as I wonder how it will impact my geriatric years.” — Sabrina Ganske Guillaume

30. “It’s extremely frustrating having test after test that ‘proves’ there’s nothing wrong, or being told it’s all in your head. I know my body. I know when there’s something not right.” — Mirella Joy

31. “I’m not in pain because I am depressed. I am depressed because I am in constant pain.” — D’Ann Maria Kirkwood

32. “I don’t make up my symptoms. I am in actual pain. I reach out for help, not for attention.” — Tiff Paige Miller

33. “I wish they could walk in my shoes for a day and see how much I struggle, yet how strong I really am for all I go through.” — Jenny Kerestus

I wish they could walk in my shoes for a day and see how much I struggle yet how strong I really am for all I go through

*Some answers have been edited for brevity and clarity.

What would you add to this list? Share with us in the comment section below.

*Sign up for our Fibromyalgia Newsletter*

33 Things People With Fibromyalgia Wish Their Doctors Knew

“You poor thing.”

Her face was contorted in an approximation of pity, but that one sentence has stuck with me for years. Not because I didn’t want to be pitied (although I didn’t), but because she confirmed my suspicions that my illness wasn’t as invisible as I wanted — and as a consequence, neither was I.

On the day in question, we were meeting at a writer’s conference in Boston. I had spent the previous six weeks at the Vermont Studio Center on retreat, working on the manuscript that would become my first book. Several weeks prior to that, I had traveled to Las Vegas to cover a tech conference with my fiancé, enjoying some world-class meals and reconnecting with an old friend as we wandered the lavish casinos and saw the sights. The weekend before that, I’d graduated with my MFA in writing. I was on sabbatical from my job as a reporter, a job I loved, and on this particular day, I reunited with friends from undergraduate and graduate school, some of whom I hadn’t seen in years. It was, by all accounts, a great day in a pretty great life.

But what she saw was someone to be pitied.

At the time, I had not yet been diagnosed with fibromyalgia and chronic fatigue syndrome but was handling the symptoms as best I could. One of my doctors had prescribed wrist braces to help with shooting pain in my hands. I wore them when I typed, wrote or used my hands for any length of time. I used a walking stick periodically and had it that day to cope with the dizzying effects of heinous hotel carpeting, anxiety-inducing crowds and a tiring conference schedule. I was exhausted and in pain, but that was nothing remarkable. Concealer is a magical thing, after all. My hair was done, some of my favorite clothes were on my back and I’d just heard a fantastic lecture. I felt pretty dang good.

What I heard from my friend’s comment was that, in her eyes, I didn’t look that way at all.

To say it ruined my day would give that moment too much credit. It passed, as moments do, and we took a group photo, had a few glasses of wine and went our separate ways after much (gentle) hugging. But even years later, I remember that comment long after anything else we talked about has faded. It shook me to my core, because it confirmed my deeply held fear that people were staring at and judging me. That I was an object to be pitied instead of a fellow human being doing what she could to get through the day.

She didn’t mean any harm and probably thought her sympathy would make me feel supported. But it made me feel exposed and left me raw for a long time afterward. Words can do that. If I could go back in time, I’d tell that friend to save her pity for someone who needs it. That her pity was not only unnecessary, but it reminded me of my struggles when I was enjoying a good day. People who’ve never experienced illness or disability may not realize there’s a pride element in how we’re seen at our lowest — that I’ve had to psyche myself up to leave the house on bad days, not only because of how I feel, but because of how I look to the rest of the world. It takes strength to appear weak, and even the most well-meaning acknowledgements of that weakness can knock the sturdiest of us down.

I’m learning to be more open about my limitations, but I still have a hard time sharing my struggles. Interactions like these — and there have been many, both before and since — don’t make opening up any easier. Be kind to your friends who live with illness and disability, but even more importantly, be sensitive to how your intended kindnesses may be perceived. Their impact may surprise you.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Real People. Real Stories.

150 Million

We face disability, disease and mental illness together.