Being Told ‘You Don’t Look Sick’ Tops List of Offensive, Annoying Comments
What does sick look like? I often have wondered why people think they can tell just by looking at you what you are experiencing. Then they will try to tell you what you are experiencing.
How many times have you expressed not feeling well, only to have someone say, “Well, it can’t be that bad, you don’t even look sick.” If I were a mean person, I would wish that they could experience what I endure on a bad day — just for a few hours. But it would be bad karma to wish something like that, right?
I know I am quite sensitive when it comes to how I am perceived with lupus. I share a lot on social media. Almost from the time I got my diagnosis, until now, I have been extremely open about this disease’s effects on my life.
Prior to becoming ill, I was an entrepreneur. As a savvy business woman I often would say, “I don’t get offended easily. If you want to offend me, treat me like I’m stupid.” Well, now it seems I have added something new to the list. If you want to offend me, treat me like I don’t matter.
I never would have in a million years thought I would be bothered by what are seemingly innocent comments, some of which I may have made myself before I became ill. I hope the sensitivity will diminish over time.
My lupus diagnosis is just a little more than a year old, and I think I am still not totally settled in. I am still coping with the dramatic changes that have taken place in my life. When I hear someone tell me I don’t look sick, I know its meant to be a compliment. But all I hear is “Are you telling me the truth? Because to me you look fine.”
When someone compares their ever-so-often pain to my chronic pain, I just want to scream at them “It’s not the same!” When people tell me to “eat this, exercise, take that supplement,” I just want to do a great big eye-roll, and tell them to shut up. But I know they mean well.
I am just in my feelings because I still have no understanding of how I was selected for such an ugly disease. I certainly don’t think anyone deserves this, so pardon me when I say I don’t understand how I was selected. There are people out there who kick puppies, don’t like cute babies and will rob their own mothers — and they are healthy. (That surely sounded like I do think some people deserve this, but I really don’t; I’m just saying there are some crappy people in the world.)
At any rate, if someone tells you they have a chronic illness, don’t dismiss them based on what they look like. Most people don’t look sick. Most people only look sick if they have undergone some sort of major trauma, such as chemotherapy. (In case you’re wondering, chemotherapy is a treatment for lupus.)
I know it’s hard to know what one person will find OK, and what another person will find offensive or annoying. But if you want to know one thing about those of us who battle chronic illness, I can tell you that being told you don’t look sick tops the list.
Don’t believe me? There’s a hashtag. That’s proof by today’s standards. So, please, stop telling people that!
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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to lupus.
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Comments
Eddie Phillips
Hi Kellie
Yet another thought provoking article that will resonate with not only sufferers but with carers, I often get asked the same response of "she doesn't look ill" when I talk about my wife.
Oh and by the way, your piece on writing a therapeutic blog, worked for me and I now have one of my own, but have gone public with it.
Keep up the great work
Eddie
Kellie McRae
Hi Eddie, I love that you've started a blog, it really has helped me and I'm happy to know that its working for you as well. I am also happy to have someone who is a caregiver weigh in. So often, you are the forgotten ones. Suffering alongside the person you love and helping them on those really tough days, its a lot to deal with I'm sure. I appreciate you for being there, so many of us wish we had that someone and those of us that don't worry that we never will so thank you.
I have really short circuited a lot of people with 2 things. I ask if their appearance changes when they get a headache and they stop and think about that for a minute. I then ask, so if your appearance doesn't change, does that mean you don't actually have a headache? I have also asked people if they've ever put a pair of running shoes in the dryer with very few clothes. Most of us have, I ask what happens? Inside those shoes are banging about, making all kinds of noise, sounds like they should be wrecking that dryer but you go to check and the dryer looks fine, ever so often the shoe will hit the door just right and it will pop open for a short glimpse inside but overall, the shoes are wreaking havoc inside but the outside looks great. That's how I get people to understand and see things a little differently. I hope this helps you the next time someone says your wife doesn't look sick. Awareness will hopefully stop folks from saying stuff like that.
carol carney
I totally agree with you....I was diagnosed with Lupus in 2013, I also have APS(Antiphospholipid Anti-body Syndrome), Sjogren's Syndrome, Fibromyalgia, plus numerous other dx's. The worst part for me is that even some of my family members don't understand the diseases and what they do to us. I don't want them to feel sorry for me...just to understand why I can't do the things I used to be able to do without calling me lazy and other names....
Kellie McRae
Hi Carol, It always makes me sad when people close to me don't fully get it and think I should still be able to do what I used to. Its funny though that even when they see evidence, they still want you to perform the way you once did. After a recent hospital stay for me, friends were like, come out and do this and that with us (I had a swollen heart, liver and lungs and they still wanted me to come out within days of being released from the hospital) so I don't think anyone can truly understand unless they are going through it themselves. I am working to shift my mind to the thought that if they think I'm lazy, it's a compliment lol They are mad because I can't spend time with them. I hope you get some high energy, low pain days in there and can make the most of some time with friends and family. Thanks for commenting.
Patricia Tyahla
Hi Carol,
I'm sorry you are going through so much at one time. It's not fair, is it?! I too, have Sjogrens, fibro, disc degeneration, so on and on. I was initially diagnosed with Ankyloysing Spondylyitis(AS) and Sero-negative RA. Current rheuma says no, you dont have those. You have high ANA's for Sjogrens, so you have SS. I had that awful lip biopsy, which was negative, but doc says I was on Orencia at the time and that may have thrown the inflammation off? I also have high ANA's for Lupus, but doc says I dont have that. I also have the gene for AS, but she says I dont have that either. According to her, I cant have 2 autoimmune arthritis' at the same time. I do not know if this is true or not.
I have a rash on my face for 2 years now. I finally got myself to the dermatologist and she says it's either rosacia, lupus or RA. Rosacia is also caused by inflammation.
I go to pain mngt and one day one of the nurses asked me if I work and I said no, Im on disability and she said, You are? I said yes and she said shes sorry, but that I look too good. I said, Its Maybelline, Revlon & CoverGirl! LOL. When I dont wear makeup, I DO look sick. And sometimes I do not feel good enough to even put it on.
No one seems to fully understand how it feels to be this sick & tired & in pain. Honestly, how can they? Unless they feel it too, they have no idea.
God Bless us, everyone!
Kellie McRae
It is so frustrating that these diseases are moving targets. No one symptom so they can definitively diagnose us and like you said Patricia, they come with other diseases. Like wayward teenagers whose parents are out of town for the weekend, they just invite their friends over to tear stuff up. I wish for all of us more understanding caring professionals because what we look like should not be an indicator of our care or our work status.
LisaJo
I hate the word hashtag as much as I hate someone telling me I don't look sick...
Kellie McRae
lol, sorry but its true. I don't know about you but what I hate more than the word hashtag is the fact that I'm old enough to remember when it was just a pound sign :-)
LisaJo
Yes exactly, I do remember it when it was just called a pound sign. I could never figure out why or how it got started being called the other. Lol
Michelle
I TRY to take you don't look sick as a compliment, and just say thank you. The worst for me is some gym rat or MLM person trying to push supplements down my throat. That is great you heard in a seminar somewhere that these vitamins "cured" an autoimmune disorder. My doctor with multiple degrees does not concur.
Kellie McRae
Girl! You are singing my song right now lol I literally just got tagged on Facebook for a tea that miraculously cures lupus! I get so frustrated with the MLMers too. I recently shared that if you are not battling this disease, do not send me your cure because you are walking in the dark. I wish that what they offered was an actual cure, they have no idea how bad I wish it were true. Many are just trying to make a buck, they could have my last dime if they could really cure us. In their heads, becaause we look well to them, they think we can do what they do and grab some reps at the gym or take some supplements and we will find energy filled pain free lives. Oh but if only.
Anonymous
Yeah, I had a woman at my child's school tell me "You don't LOOK like you're sick". "No, YOU don't do chemo, I KNOW people who've done chemo, and you don't look anything like someone who does chemo, you're NOT doing chemo" (when I'd said I do a mild oral chemo drug, after she accusingly asked me what meds I take). This wench also asked what kind of symptoms I have, when I replied that I'm really tired, she said, "Well ALL mothers are tired, I have 4 kids, so I'm the one who should be complaining of being tired, not YOU". Sadly a few women are just B's, dissing and gossiping about women who they perceive as vulnerable is how they demonstrate "power" and "dominance" within their social circle. It's unfortunate. Please remember that there are still good people out there, so just ignore the idiots : ). Smile and wave ladies, just smile and wave ... : ) (Penguins of Madagascar)
Kellie McRae
People can indeed be busy bodies but fortunately for us, we don't have to prove to anyone what we feel and too bad for them that they have not learned empathy, sympathy or to simply mind their own business.
Anonymous
Thanks Kellie. I'm still learning that "we don't have to prove to anyone what we feel". In my former life I was a type A personality, a business owner, hard worker, mother, wife and volunteer extraordinaire that rarely said no to any reasonable request. I had patiently, privately and politely explained Systemic Lupus to this pushy gal before, and I'd already done more than my fair share for our school fundraiser. Instead of saying thanks, she wanted to offload more work onto me. She didn't care, or accept, that I was too ill to help further, she was simply angry that I wouldn't be manipulated, insulted or coerced into doing much more than I already had. Learning to respect my limitations and boundary setting are still new skill sets for me, in that way she's an absolute God send as she frequently helps me practice them : )! BTW, your blog is awesome Kellie, it nourishes one's mind and soul, I love it! Thank you so much for doing it and lifting our collective spirits! : )
Kellie McRae
I know those boundaries sometimes can bother others lol but you know very well that we must have them or we will pay dearly. So sad that some people have no empathy but one thing I have learned in this crazy life is that what goes around really does come around. I hope she never has to experience lupus but I have a feeling that life will issue her a lesson on compassion at some point. I'm glad you are enjoying the blog and I am also happy it is lifting your spirits as well. I am always excited when I get new comments so you lift my spirits as well :-)
Deidre
Thanks for your wonderful blog, most of what you say is as if I could have written it myself - so relevant!!
Kellie McRae
Thank you Deidre, I appreciate you for reading and commenting :-)
Jane Woods
Hi,
Wonderful blog.
The health system is failing seriuosly. The money should be spent on betterment of beds, nurse rooms and for general assistance. From many years now, in US, Healthcare websites like everydayhealth.com, mayoclinic.org, etc..are giving articles, but ACT need more public servants than NSW.y whole life I had always had horrible fatigue and never slept well. At 17 I developed horrible rashes and went to see a dermatologist and he tested me for lupus because of my family history. I have debilitating fatigue, dry eyes and mouth, skin issues, fibromyalgia, depression, anxiety and Raynaud"s.
Long time I am reading articles on top healthcare websites like Mayo Clinic (mayoclinic.org), EverydayHealth (everydayhealth.com), Northwestern Medicine (nm.org), etc...
I"m 31 now and I haven"t been able to work full time since 2011.
Please help!
Regards,
Jane