Do people doubt you’re sick? If I had a quarter for every time somebody said I was making up my symptoms “for attention”, I’d be a wealthy woman. ChronicBabe.com founder, blogger, and chronic illness expert, Jenni Prokopy, understands the struggle.
She’s been an advocate for people with chronic illness for 10 years, so she’s learned how to turn a negative situation (somebody not believing you) into an educational and enlightening experience.
In this interview, she answers a few questions about her own chronic illness experience and gives you some tools to use the next time you find yourself in that awkward “there, there” situation.
1. What is the most insulting thing a medical professional has ever said to you regarding your chronic illness?
The most awful thing a physician ever said to me about fibromyalgia was: “Take Advil and get ready for a life of pain.” She was so dismissive of me and gave me almost no time to ask questions or talk through options. That was an intense moment for me; I felt so helpless and lost, and she was my doctor – she was supposed to be guiding me and helping me.
“That was an intense moment for me; I felt so helpless and lost, and she was my doctor – she was supposed to be guiding me and helping me.”
I also had a neurologist once tell me I just needed to relax. This was during an exam for Bell’s Palsy – part of my face was paralyzed and drooping. The doctor was so lovely and caring for about 95% of the appointment, but then he said that Bell’s Palsy can be caused by stress and that I should relax.
That made me so mad! The notion that I had somehow caused part of my face to collapse was ridiculous – and it definitely did not help me relax and manage my health better.
It’s hard to hear these things. In my heart, I know physicians care and they want the best for us – they want to help us get well. But sometimes they say things they probably don’t realize impact us so enormously.
2. What are some productive ways a person living with a chronic illness can explain their condition to those who don’t believe them?
Well, if someone called me a liar, I would cite statistics to them: NIH funding and research, CDC positions, occurrence statistics from whatever national patient advocacy organization is appropriate. I walk through my life with those numbers – as they apply to fibromyalgia – memorized for the (now) rare moments I encounter a naysayer.
Sometimes, you encounter a naysayer who just won’t believe you, and it’s not worth your breath to try to convince them. In fact, it can add stress to our lives to fight with people who don’t believe us – so I encourage folks to use their best judgment about when to stick up for their truth and when to walk away.
“In fact, it can add stress to our lives to fight with people who don’t believe us – so I encourage folks to use their best judgment about when to stick up for their truth and when to walk away.”
But, if you meet someone who is curious, or maybe has never heard of your condition, or expresses doubts, that’s your opportunity to be an ambassador for yourself and your community.
Prepare a 2-minute elevator speech that helps you describe your condition quickly, hitting the high points, and explaining how it impacts your life.
Here’s an example from my experience… let’s say I meet someone at a party and they’re like, “Oh, you have fibromyalgia? I didn’t know that was real.”
Here’s how I would respond:
“Well, that’s actually an outdated notion about the condition – it’s actually a recognized diagnosis by dozens of health organizations around the world, including the American Medical Association, CDC, the American College of Rheumatology, and more.
It’s estimated that five million Americans live with it – a lot, right? For me, it means daily chronic pain and fatigue, plus a handful of other symptoms that sometimes limit me physically and mentally.
But, I work with an interdisciplinary team of health care providers so we have a plan of action that includes a wide variety of coping mechanisms, including medication, yoga, exercise, diet, meditation, and much more.
I’m an international advocate for people with the illness, so I’m happy to answer any questions you have.”
I’ve practiced saying this in a mirror; I’ve used it over and over. The easier it is for you to say, the more comfortable and powerful you’ll feel talking to someone who doubts you. And, you just may turn them into an advocate!
3. Why, in your opinion, do healthy people have such a hard time believing someone has a chronic, invisible illness?
I think many healthy people are scared when they encounter illness. It feels easier to not think about the possibility that you’ll get sick, and the idea that someone like us can get sick out of nowhere.
When I first was getting diagnosed with fibro and the other conditions I have, I was very healthy: a swimmer, eating pretty healthy meals, staying very active. I looked like I was in the best shape of my life.
But, I also felt like I was dying – I actually thought I was, that’s how sick I was. So, for people who’ve never been sick, that’s a scary thing to hear, and makes them confront their own mortality in a way – so I think some people push back because they want to stay in denial.
The reality is, all of us will eventually get sick with something. Even if we don’t have active disease, we’re all still “patients” – we go for routine physicals and immunizations.
I also think that, in America at least, there’s a very old cultural idea that if you work hard enough, you can accomplish anything. Some people think that carries over into health: If you only work hard enough, you’ll find a solution. If you only worked harder at self-care, you wouldn’t have gotten sick in the first place.
This notion is bogus, and I think it feeds the cultural ideal that the “best” people are the “hardest-working” and “healthiest” people. The reality is, you can be in “perfect” health and work super-hard to stay that way, but you can still become ill. It’s not a personal failing.
Finally, I think some people just lack empathy. Perhaps they’ve never really struggled, or they’ve never known someone who is sick, and, for some reason, they don’t have empathy for us.
And that’s a shame. Some people only learn empathy once they’ve struggled themselves, so I have hope – even when I meet someone who seems entirely unempathetic – that one day, they’ll come around.
4. Are there statistics that show the percentage of people who actually fake a disease versus those who genuinely struggle every day?
I don’t know of any specific statistics, except I’ll say that Munchausen syndrome is a very real thing; there are people who face true mental illness that causes them to fake physical and mental illness. Those folks need treatment, too, for their mental health disorder.
And there will always be people who fake illness just to get attention, which is ridiculous. Unfortunately, there are a few really standout jerks who’ve faked cancer to raise money online – things like that – and they give the rest of us a bad name.
So true. Arming yourself with solid information and practicing a calm, confident response is good advice. (Although it can be really difficult at times.) Props to Jenni Prokopy for taking the time to do this interview and staying cool under pressure!
Photos of Jenni Prokopy courtesy of Elizabeth McQuern
Man with hands over ears courtesy of Flickr/MondoPhoto