Most people experiencing a chronic illness knows they get told some pretty crappy things. When you’re ill, everyone feels like they’re entitled to your life story, your most personal details, and by that they feel like they can judge. People accuse you of faking when you reveal too much, or when you reveal too little, and the line between “perfect amount” and “too little/too much” is all to fine.
Here are a few comments made to me, paired with what I wish I was brave enough to reply:
1. “You don’t look sick or disabled!”
First, please tell me what this looks like? Second, there are many days I do look “healthy” and I’m thankful that I don’t look how I feel, but what I hear when you say this is, “You don’t have your condition because you look healthy.”
2. “You don’t need that medical equipment.”
Well, actually, you see, I do. All of the medical equipment I own, from my wheelchair to my handicap placard have been suggested to improve my functionality by my doctors. Even the service dog that I’m fundraising for has a unique purpose that cannot be completely mitigated by treatments, medication, etc. No, I don’t need them all the time, and thus I don’t use them when I don’t need them, but needing them occasionally is different than not needing them at all.
3. “You don’t know what
Please, enlighten me. Tell me how my illnesses are not “really being ill.”
4. “You don’t need that treatment or medication.”
See my response to number two.
5. “You’re not sick, you’re faking for attention!”
Have you walked in my shoes? Glad you deduced this based on the vague information that I’ve provided, that you saw on the internet or the brief moments that you’ve been around me real life. Please inform my doctors and “watch the lies unravel.”
6. “At least you don’t have cancer.”
Nope! And I’m so thankful for that! But other chronic illnesses still kinda suck.
7. “Your illness doesn’t cause (symptom/other illness), ever.”
Having a condition doesn’t make you an expert on it. Nor does having a medical degree. If you haven’t studied up on the years and years of research behind my illnesses, you have no place to talk. Many illnesses have a lot of research left to definitively say if something is or isn’t part of it. (For instance, whether postural orthostatic tachycardia syndrome is a common comorbidity of Ehlers-Danlos syndrome, outside of hypermobile Ehlers-Danlos syndrome, or if it’s an atypical occurrence.) Many illnesses are also variable, meaning they vary from day-to-day within a patient, but also vary between patients. Sure, many illnesses follow a typical clinical presentation, but the degree in which that particular symptom or comorbidity affects a patient is extremely wishy washy.
8. “I have this illness and I manage just fine.”
I’m truly glad you can manage you’re condition, but I still struggle with it. We’re different people, different circumstances.
9. “You’re too young to be sick!”
Someone tell my body that, please? I’d like to stop being ill.
10. “You were fine yesterday!”
Yes. My illnesses are variables. I can go from feeling like I can run a marathon to feeling like I’ve been hit by a bus in a matter of seconds. I never know what I’m going to feel like.
11. “Wouldn’t you rather be healthy?”
Yes. I would give anything to be healthy again. But unfortunately that’s not a choice that I have. My illnesses are lifelong unless a cure is found.
12. “Stop mooching off the government and my tax money and get a job!”
I think this is one of the funniest ones I’ve been told. I have no issue with those who need it getting government aid, but I don’t get a cent of government money. I have two “real” jobs and three side jobs, and am a full-time graduate student… all while dealing with my illnesses – and paying for everything on my own, too.
13. “If you’re obsessed with Disney and you’re posting about your illnesses, you’re probably a Munchausen’s case.
Yes, I have had this said to me indirectly. I don’t even know how to respond…
I am very grateful that I don’t look sick, that I’m not going to die, etc., but my journey is still valid. My problems are valid. My illnesses are valid. I am valid.
What are some things you’ve been told and what do you want to say back?
By: Ali H.
From: The Mighty
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