10 People Who Stood Up to Chronic Illness-Shaming
After dealing with all the physical and emotional symptoms of having a chronic illness, the last thing anyone needs is to feel ashamed of their illness. Unfortunately, so many people living with chronic health conditions must contend with uneducated questions or comments about their condition, or confusion because they “don’t look sick.” And because there is so little general awareness of the reality of chronic illnesses, it often falls to the patient themselves to educate others and stand up for the the chronic illness community.
When people who are chronically ill do take a stand against illness-shaming, it can help show people who don’t know much about the illness why their judgment is unfair. So we found 10 people who have spoken out against the judgment and shame they’ve experienced due to their illness. They’ve helped show the world that having a chronic illness is nothing to be ashamed of and nothing to be discriminated against — and that a little empathy can go a long way.
There are so many millions of people who fight for the chronic illness community every day, and these are just a few. Let us know who we missed in the comments below.
1. Yolanda Hadid
Few people have had their experience of being shamed and doubted for their illness as heavily publicized as Yolanda Hadid. As a cast member on “The Real Housewives of Beverly Hills,” her battle with Lyme disease — and other cast members’ doubt of her diagnosis — was a storyline on the show. She spoke out against her costars’ unkind remarks on the show, and wrote a blog responding to the accusation that she had Munchausen syndrome — when a person acts as if they have a physical illness.
I am inspired by my life on a day to day basis and consciously avoid stressful situations by walking away and letting go of remarks from people like the women in this group, but it seems in today’s world your word isn’t good enough anymore so even though I should not have to prove my case, I’m not afraid to do so. I will move on from the absurd Munchausen comment that is an insult to my integrity and that of my two children who battle this disease on a daily basis.
2. Selena Gomez
Selena Gomez took a break from touring in 2014 to go to a rehab facility, causing fans to speculate the “real reason” she was seeking help. As she told Billboard in 2015, it was to deal with anxiety and depression brought on by her lupus diagnosis, and she hit back at those who were critical.
I was diagnosed with lupus, and I’ve been through chemotherapy. That’s what my break was really about. I could’ve had a stroke… I wanted so badly to say, “You guys have no idea. I’m in chemotherapy. You’re a**holes.” I locked myself away until I was confident and comfortable again.
3. Seantrel Henderson
Seantrel Henderson, an offensive tackle for the Buffalo Bills, made headlines last year when the NFL suspended him for using marijuana. However, there was more to the story: Henderson has Crohn’s disease, and doctors had prescribed him marijuana to help treat his illness (which had led to a temporary ileostomy and ostomy bag). In an interview with The Buffalo News, Henderson stood up for the true reasons he was using marijuana and what the NFL got wrong about their assessment.
I’ve got doctors telling me this is the No. 1 medicine that would help your disease. You try to tell that to the league and it seems like they didn’t care too much.
4. Laura Hillenbrand
Bestselling author Laura Hillenbrand wrote “Seabiscuit” and “Unbroken” while living with chronic fatigue syndrome. In an interview with the Stanford School of Medicine, Hillebrand spoke up about the disbelief and shame she’s had to deal with from doctors and even loved ones who don’t understand her condition — she even said she was mocked on-air during interviews. She explained that she doesn’t believe the contempt is the fault of patients, but rather people who aren’t able to accept that CFS is in fact a real, misunderstood disease.
I think people are very afraid of the idea that they could get a disease for which there is no cure, for which there is no real transformative treatment and there is no explanation. They don’t want to believe in that level of chaos in the world, they want to believe they’re safe. And we as people suffering from this are evidence that this can happen. So I think that’s part of it, they want to deny that so they need to deposit us in the category of mentally ill or depressed or malingerers or lazy or whatever contentious column they want to put us in instead of accepting that this is a real and not-understood disease.
5. Ste Walker
Ste Walker, a 25-year-old from England, has Crohn’s disease and was tired of people making assumptions about his health based on his appearance. So he wrote a now-viral post on Facebook explaining his tubes, scars, ileostomy and ostomy bag.
So the next time someone says to me, ‘Well you look perfectly fine, why are you using that disabled toilet or parking in that disabled spot?’ or ‘You’re conning the system, you’re not disabled, you don’t need that walking stick,’ just stop and think. Maybe I just want to be fine or to feel normal, you don’t know what I go through on a daily basis and you have no right to judge me just on your perception of me because you don’t know what goes on inside.
6. Jamie-Lynn Sigler
Jamie-Lynn Sigler didn’t talk publicly about her multiple sclerosis diagnosis for 15 years because, as she told Glamour, “I thought that work wouldn’t come anymore. I thought that people would see me as sick and not see me as me. I enjoyed when people didn’t know, because I thought that meant I was hiding it really well that nobody would know.” But she confronted that fear and shame she had over her illness and “came out” in 2016, realizing that she was walking around like she had done something wrong by having MS.
I started to realize I was harboring all these feelings of shame and guilt, and it’s true, I didn’t do anything wrong, so why was I feeling so embarrassed and labeled by this?
7. Harnaam Kaur
As a child, Harnaam Kaur was diagnosed with polycystic ovary syndrome, a condition that caused her to grow facial hair. She was tormented by bullies who called her names like “beardo” and endured daily waxing and shaving to remove her facial hair. But at 16, she decided to stop fighting her “lady beard” and accept who she was. She told HuffPost that deciding to embrace her beard meant that she would no longer be “locking herself away.”
All that matters to me at the moment is that I love myself. I love my beard and all my other little quirks – my tattoos, my scars, stretch marks and blemishes. I want other women to find the strength that I have. If I had any message it would be to live the way you want – it’s your journey and it’s your life.
8. Michael J. Fox
After Michael J. Fox appeared in a series of ads supporting political candidates who are in favor of stem cell research in 2006 (Fox was diagnosed with Parkinson’s disease in 1991), radio host Rush Limbaugh said on-air, “He is exaggerating the effects of the disease. He’s moving all around and shaking and it’s purely an act… This is really shameless of Michael J. Fox. Either he didn’t take his medication or he’s acting.” In response, Fox appeared on ABC’s “This Week” and fired back, advocating for sick peoples’ right to show their symptoms in public without being judged.
It really brings up the specter of, “Go away. Shut the windows. Shut the doors. Close the curtains, and suffer, and don’t let us know,” because it’s a fearful response. And what the irony is, is that those people that are being pitied or being asked to suffer in silence don’t want to suffer, don’t see themselves as pitiable, don’t see themselves as victims — see themselves as citizens, participants in the process, and people with aspirations and hopes and dreams for the future. They are way more positive as a whole than what I’ve seen from the community that opposes them.
9. Cyndi Lauper
Cyndi Lauper first started seeing signs of psoriasis like sores and flaky skin when she was on tour. She told the National Psorasis Foundation that she tried to hide it under makeup and clothes, and would sometimes stay in bed. After she got treatment, she decided to share her story so others would get help and not feel like they needed to hide — the way Lauper said her psoriasis made her feel like it was “swallowing” her up.
I’m not talking about it because I feel sorry for myself. I’m talking about it because no one talks about it. I didn’t understand until I met people from the National Psoriasis Foundation and they brought two other people who had suffered their whole life with it. And what they told me was really kind of moving, that nobody really talks about it and a lot of times you feel alone. I know I felt alone.
10. Nick Jonas
Nick Jonas first started noticing changes in his body and mood when he was 13, and was diagnosed with type 1 diabetes soon after. Since then, he’s been open about how he manages his health while touring and recording, and in an interview with Diabetic Lifestyle, explained that he still deals with unfair misconceptions about diabetes, like the idea that he “caused” it himself.
I think the negative is just that we still have such a long way to go until people are really educated and you stop getting asked the questions that are the eye-rolling questions. The eating sugar questions. “What did you do to get diabetes?” Those questions are hard… I’m not going to lie. It’s annoying and hard and I know that a lot of diabetic friends of mine feel the same way. But we are getting there. It’s just a process before people really start to understand.