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!
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.