When I tell people I have Meniere’s disease, I expect two reactions in this exact order: “What’s Meniere’s disease?” followed by “What? You? No way you have a chronic illness.” Sometimes I wonder if people know when they are being offensive.
These are the top five insults I’ve heard:
1. “You don’t look sick.”
Having an invisible illness feels terrible when people don’t believe you or think you’re making symptoms up just because they can’t see it. I don’t look sick enough so I must be faking it. So what does the face of someone with Meniere’s disease look like if it’s not mine? How can people tell if you’re sick or not just by looking at you? How could anyone think they could know what another person is experiencing from the outside? The funny thing about invisible illnesses is just that – they’re invisible! Most times the symptoms don’t involve our outward appearance.
2. “Have you tried _____? It’ll cure you right up.”
Yes. You name it, I’ve tried it. Some people try to tell me how to “cure it” without knowing anything about Meniere’s disease! As if I haven’t spent countless hours researching and trying new methods to find my own relief. I appreciate the good intentions, but unless you’ve experienced Meniere’s disease yourself and found a cure, I’ll pass.
3. “I’ve had _____ and it was worse than Meniere’s disease.”
The worst comments I get are from those who try to tell me they’ve experienced something similar that felt “worse than what I’m going through.” You have no idea what I’m going through unless you’ve experienced it firsthand. I wouldn’t wish this disease on anyone. Sure, there are worse things than Meniere’s disease, but it hurts when people invalidate my pain and make it feel like a competition of who’s been through more.
4. “You’re too successful to have a chronic illness.”
The common misconception is that people with chronic illnesses are in bed all day and can’t do anything productive. There’s no way we could be happy, successful, functioning members of society, right? Wrong! True, I am lucky. I am fortunate enough to manage my symptoms enough to run two businesses and raise a family. However, you will never see the struggles I go through that are behind my success.
5. “You’re too young to have Meniere’s disease.”
I was diagnosed with Meniere’s disease at 14 years old. Chronic illnesses do not choose their victims based on age. I know Meniere’s disease patients who were diagnosed at 7 years old! You just never know what life is going to hand you and when.
This is just the peak of the long list of offensive comments people with invisible illnesses hear. If you’re a fellow Meniere’s disease patient, I’m sure you’ve heard them all. You’re not alone.
To friends and family who have a loved one with an invisible illness, I urge you to to acknowledge their pain and offer love and support. Educate yourself about what they’re going through and find ways to show them you care. Words of encouragement and motivation can go a long way for someone who’s battling an invisible illness. Showing your concern and consideration can be just what they need to keep fighting.
Sometimes it’s as simple as saying, “I believe you.” -Candice-Renee Palacio Carrillo
Candice-Renee Palacio Carrillo is a 27-year-old professional and lives in Hawaii with her husband and two children. She lives with Meniere’s Disease and is Hard of Hearing. By sharing her story she hopes to raise awareness for this debilitating illness and give hope to others suffering from it. https://themighty.com/2018/03/what-you-shouldnt-say-to-someone-with-menieres-disease-invisible-illness/