Guest Blog: Ouch! 3 Tips for Responding to Insensitive Comments About Your Illness

by WEGO Health

JessicaThis is a guest blog post written by Health Activist Jessica. Check out her blog Fashionably Ill and follow her on Twitter @JessicaGimenoand on Facebook https://www.facebook.com/fashionablyill

Ouch, that hurts!

Ever had someone say something insensitive about your illness?  Last week, I went shopping with my medical mask.  I’ve learned that if I act like this is normal, people around me usually do the same.  As I was paying, the saleslady laughed and said, “What are you contagious?”

I wanted to snap at her. Instead I calmly said, “I’m not contagious.  I have an autoimmune disease and I can’t get a cold or the flu.”

She replied, “Oh, I really like your shirt.”

I said, “Thank you.”  After all, it was a fabulous shirt.

That was it.  It was one of those “did that just happen?” moments. I had left the house that day after being bedridden for three weeks and her words were the last thing I needed.  I’ve had other experiences like these because I have Bipolar II (diagnosed at age 18), Polycystic Ovarian Syndrome (19), and Myasthenia Gravis or MG (24).  MG is a neuromuscular autoimmune disease whose symptoms are often confused with Multiple Sclerosis.  From meeting other sick women with mental illness, and diseases like Lupus, Alopecia, MG, Sjogren’s, and Fibromyalgia, I know I’m not the only one.

Lack of Understanding

I’ve heard everything—people who knew I was sick calling me fat when I gained ten dress sizes between 2008 and 2010.  Or new doctors assuming I’m lying about being in pain because I have bipolar disorder and “mental illness = dishonest.”  Some mean remarks are born out of misinformation—the media says that all mentally ill people are bad. Other comments are born out of a need to make sense of the senseless.  When people ask why I carry a cane, I tell them I have Myasthenia Gravis.  This elicits a “say what” look.  Because MG only happens to 1 in 100,000 persons, some people insist that I must have done something wrong—surely I was doing drugs, not exercising, and morbidly obese.  When I tell them I never did drugs, exercised daily, and was slim, they scratch their heads in disbelief.  Because deep down, they know that illness can happen to good people—it can happen to them.   That scares them.

 

Getting ready for the holidays

The holidays are great for bonding with family, friends, and acquaintances, but we can sometimes be confronted with insensitive comments at gatherings.  Here are 3 suggestions:

  1. Expect insensitivity:  When it comes to physical changes, I’ve learned that people are visual and that society expects women to never change.  Ever.  With my bipolar disorder, I’ve learned that mental health stigma is ubiquitous.  At a recent party of a high school friend, teachers were asking me about my job.  When I told them I was preparing to speak at a mental health convention, they wanted to know why, which prompted me to tell them I have bipolar disorder.  They looked shocked.  I broke the tension when I responded by calmly saying that I have this illness, I’m doing well, and it’s a part of me (like my race) but it does not define me.  This lead to a healthy discussion on mental illness.
  2. Differentiate between the intentional and unintentional:  Some people get high from kicking others when they’re down—it makes them feel better about their own insecurities.  If someone doubles down when corrected (example: “No, you really are fat!”), he/she is deliberately mean.  I don’t waste my time with him/her.  By contrast, when a well-meaning friend says something tactless (“I could barely recognize you because you’ve changed so much”), I explain why those words hurt.
  3. Respond, don’t react:  I wanted to snap at the salesgirl.  But I didn’t because I’m a Christian and my anger would accomplish nothing.  Who knows?  Maybe she googled “autoimmune disease” later.  She probably won’t laugh at another masked customer seeing as she tried to atone by complimenting me.   When we are insulted, we have an opportunity to educate others about our illnesses.  Ultimately, some of those people will learn to treat other chronically ill people with compassion.

 

–Stylist to the Sick,

Jessica Gimeno

  • sandi

    This very interesting information. As an American with a Disability (Lupus) I can relate to you. Just because people cannot see with their eyes your disabilty, does not mean you are disabled. I too am on a mission to educate people about disabilities. Keep up the good work!

    • Jessica Gimeno

      Hi Sandi, Thank you for taking the time to leave a comment; your feedback is very encouraging. It makes the pain worth it. Yes, people need to understand disabilities better. Since MG is so rare, I made friends with many people who have lupus before I met people with this illness. My lupie friends have taught me so much and no doubt, inspire others, the way you do. Bless you.

  • http://gibsoncurrie.tumblr.com/ Dawn Gibson

    Excellent! Thanks so much for sharing.

    • Jessica Gimeno

      Hey Dawn! Nice to see you here. Thank you so much for sharing this article on Twitter and introducing me to some other brave, compassionate warriors like yourself. I appreciate the feedback.

  • http://www.flywithhope.com/ Kelly

    Fabulous! Excellent post! I loved the insight, “Because deep down, they know that illness can happen to good people—it can happen to them. That scares them.” It is so true and if those of us with chronic illness would strive to understand others as we hope they would strive to understand us, we would be in a more peaceful place within ourselves. Thanks for sharing!

    • Jessica Gimeno

      Oh Kelly, thanks for the wonderful feedback. I appreciate it; it makes my suffering and telling my story worth it. I agree–if both sides tried to understand each other, we would be in a better place. I’m sure the people in your life are learning a lot from you. Blessings, Jessica

  • swarnim

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    Bortenat 2 mg & 3.5 Mg vials. Bortenat is manufactured by Natco Pharma Ltd.
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  • N1R390

    I LOVED the paragraph about understanding. I feel like you took the words from my mouth. It is one of the worst feelings to have a doctor who is supposed to be understanding & the person you rely on the most in society to help relieve the pain you are feeling… Tell you or act like you are faking/pretending/convincing yourself that you are in pain. I had this happen to me from age 13-21 & still any doctor but my pain specialist act that way. Or people you meet “friends” or friends of friends, seeing you move slowing or need help… Or of course the “ow… Ow” & they look at your like… Is she for real? Did she really just take a pain pill? She’s 24… How could she possible be “sick” what did she do? Does she just want attention?(yes sometimes just a look can say all those things at once. People don’t understand that illness does NOT discriminate.

    I also love what you said about insults being an opportunity for education, that had popped into my head as I was reading & was very glad you added it. Sometimes if someone seems at all willing to listen or has a question, I start spilling information. Information combats prejudice & ignorance. Maybe it won’t help me personally but maybe someone whom their insult would have hurt much more will meet them tomorrow or 5 years from now. You never know.

    Thank you for your post! Sorry I feel like I wrote A LOT back.

    There is one thing I wanted to ask you. During the holidays especially when my entire family is together (this will be the first time in 4 years) I sometimes tend to alienate or be triggered into a low. I do believe this is all probably my own doing because of the guilt if just not feeling good enough to be a part of every outing or project or meal. Do you have any suggestions as to a better, healthier way to go about doing what I need for my health mentally & physically without kind of just shutting out or shutting down once I’ve “let them down” after taking a break? I hope this make sense. If not let me know & after some sleep I could reword my question.

    • Jessica Gimeno

      Wow! Your comments and feedback inspire me to keep going and keep spreading awareness. I hope you join the Fashionably ill community on Facebook. You are so brave–indeed it’s hard getting sick at a young age and that comes with its own difficulties. i’m glad this article touched you. Thank *you* for teaching others.

  • Christie

    great post – thanks for sharing your story & suggestions

    • Jessica Gimeno

      Thank you for taking the time to leave feedback. Hope you are doing well.

  • sameo416

    Good post, thanks. I find it is hard being a part of the ‘hidden disabled.’ People see a normal, healthy person…without realizing there is a hidden disability only apparent if I tell them about it. The assumption is you’re fine, and when you decline to do something (attend another evening out) they assume you’re being churlish or rejecting them. My coworkers were shocked when I mentioned one day how high my disability rating was. Just because I cope well doesn’t mean I’m not suffering.

    • Jessica Gimeno

      I’m so glad you liked the article. Yes it’s important for people to understand invisible illnesses, which is part of why I blog. I find that the website also helps healthy people understand what chronic pain and fatigue feels like. And thus better support their sick loved ones. I appreciate the feedback.

  • Maya Northen

    I too have a mood cycling condition, related to Bipolar disorder, and the insensitive comments seem to be never ending. I once sat at a table of colleagues (who were unaware that I have the condition) describing how their clients “must be bipolar” b/c they did this and that and the other thing. I listened intently for the entire time, and then when they finished talking I calmly said “actually none of those actions you describe are really indicative of bipolar disorder. If they truly have a diagnosable condition it sounds more like narcissistic personality disorder based what you described, but without knowing them, or knowing that they have been diagnosed with anything at all, I’d hate to label them or diagnose them myself, despite my having studied psychology.” (I’ve studied psychology but don’t work in the psych field right now). I then briefly explained the different diagnostic symptoms of the two disorders in “lay terms”. They kind of looked at me in amazement (and what seemed to be new-found respect) and stopped discussing their clients in this manner.

  • Andi Case

    Great post! Love your writing style. God bless you with your illnesses.