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10 Chronic Illness Misconceptions | Invisible Illness Edition

Cassie Winter

7,555 views

If you have a chronic illness and are looking for validation and understanding, or if you love someone who has a chronic illness and are looking to truly understand and empathize with them, this video is for you.

I have been chronically ill with an invisible illness / hidden disability since the year 2000, so I’m intimately familiar with all of the misconceptions I’m going to discuss today. In addition to my experiences, I’m also going to highlight those of my clients, who I call Muses, because many of them also have chronic illnesses.

Going to be talking about some tough stuff today, so skip this video if you need to. Please take care of yourself. 💖

00:00 Start
00:40 Misconception #1 | We’re Faking Being Sick
05:16 Misconception #2 | We’re “Faking” For Attention
09:08 Misconception #3 | There’s Lots of Support Available
14:33 Misconception #4 | There’s Diagnoses & Treatment Available For Us to Live “Normally”
18:34 Misconception #5 | Spoonies Are Selfish
20:28 Misconception #6 | We’re Just Stressed
21:12 Misconception #7 | Our Illnesses & Disabilities Are Our Fault
23:22 Misconception #8 | Chronic Doesn’t Actually Mean Chronic
23:55 Misconception #9 | We’re Lazy
24:55 Misconception #10 | Disabled is a Bad Word

Watch this video next to learn about one of my chronic illnesses, Hypermobile Ehlers Danlos Syndrome (hEDS)… https://bit.ly/3L6in2t

Learn more about the 🧭 Action Navigator 🧭 by scheduling a call with Cassie here: https://bit.ly/3oy5aVT

My Website: https://www.accountabilitymuse.com/

Do I have a Patreon? No, I have something better! 👀
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20 Comments

@CassieWinter Creator 3 years ago Pinned

Sending all my precious Spoonies the love and support they deserve. 💖💖💖

@nickyannajones 3 years ago

"Often we faking being well"
wow, that is profound and very true. Thank You

@amberleaholman2680 3 years ago

"Maybe it's just you" "there's always something" "what is it this week?" "Have you been drinking enough water?" "you just need to eat healthy and exercise more" "get into yoga" "you should try meditating" "it's all in your head" "you're just stressed" "you've been in bed all day that's why" "you've had all day to do blabla" "you'd feel better if you got out of the house more" "you don't help yourself" "it could be worse" "it can't be that bad because you're still here" "the doctors would know if there was something wrong" "who's the doctor you or them?"

@strigiformthunderstorm 2 years ago

Going on 15 years myself, still undiagnosed while my symptoms get worse 🙃

@vwatlas 3 years ago

I agree with everything you've said in this video, being chronically ill comes with so many hurdles and I wish doctors, strangers, and even FAMILY MEMBERS would just stop being part of the problem, stop being judgemental, and stop being a pain in my damn behind 🙄

@ladyxlittlemonster98 3 years ago

I am sorry for your experience, I remember being mentally ill at 13 and not one adult believing I had a problem, I believe this is because of ignorance and gaslighting related to gender, because I was a little girl, what would I know? So my pain went unseen for so many years, it does hurt that this type of experiences happen to us and yet there are people out there saying this is all fake

@Irrlichtwinter 3 years ago

I am feeling that "pretending to be better than you are" so much. I am so afraid of telling anyone outside my very closest, most trusted circle that I am struggling, to the point where I find myself lying to my doctors. Which is... so counterproductive. But when the doctor asks "how did you do" I find myself saying things like "oh it wasn't that bad" - meaning, hey, I managed to get out of bed most days this month, but the doctor of course can't read my mind, and know that. That's the reason I need a neutral party to accompany me to the doctors office, because the second a doctor suggests "maybe it isn't that bad" I will cave in and lie, just because of this deep seated fear of being considered "whiny" and "a hypochondriac".

@amandalashley3819 3 years ago

The one I get a lot is people wondering why my parents take care of my kids during while my husband is at work since I stay home. I already feel like a failure as a mom because I don't have the energy and have to depend on my parents so much to take care of my kids, but then to have people look at me weird or imply that they think I'm lazy or something because of it just cuts so deep.

@abmg1208 2 years ago

I am an outlier that got diagnosed with POTS pretty quickly after symptom onset. The only reason I was able to achieve a diagnosis so quickly was because I am a healthcare worker that works closely with cardiologists and intensivists. Their respect for me as a coworker meant they listened to me and took me seriously. I have other health problems that I’m currently in the process of trying to get diagnosed so I can get treatment. I did not disclose my occupation at the ER recently and was treated horribly by the doctor until my labs came back verifying what I was saying and his treatment and tone changed REAL quick. I see it at work all the time… people in the medical field can become so incredibly jaded and it’s really unfortunate. All we can do is continue to advocate for ourselves until we are blue in the face. Don’t ever stop advocating for yourself!!

@rgf11235 3 years ago

I felt this so hard. I cried and let it out. I am going share this with all my spoonie clients.

@merrovech 10 months ago

Words can not describe how much I could just body swap with my docs for a second to let them feel what it's like to be in this body

@kathleentucker1238 3 years ago

I'm now 69 years old, and I have had symptoms of EDS from early childhood. After all these years, I find a PCP who has vast personal experience with EDS and was willing to talk about it and my medical and surgical history. Imagine that. I cried 😭😭 big time! I told him about my family medical history and he has been a much needed help, along with my neurologist. I'm thankful I've had access to wonderful and kind surgeons over the past 40 years. Even some who held my hand in silent prayer! I hope that more doctors educate themselves and pay attention for early signs of Ehlers Danlos Syndromes.

@JadaStarr1969 3 years ago

My first symptoms started at 15. I was diagnosed with fibromyalgia at 50 by my new doctor (DO) who was fresh from residency. I got lucky and the first medication she prescribed worked great (Cymbalta) for a few years. Now 4 years later I’m in a flare and on FMLA and don’t know if it’s even approved yet which means if they don’t approve it, I could lose my job. Fun week ahead for me. Wish me luck.

@SOTFarchive 3 years ago

So many important truths here! 👏🏻👏🏻❤

I have really had to harp on the fact that we typically fake BEING WELL, even though the media would love to make normies think we are actually faking being sick….
You call attention to this fact and the fact that we DONT want to be seen as sick. I wish there was an easier way for us to get this obvious (to us) fact.. Oh well…

((BTW let me know if you ever want to collab ❤️ No pressure, but I think it would be fun! ))

Thanks for the awesome video. 😊

@margaretkatalinic752 2 years ago

Thank you for this video. As a mother of an adult disabled daughter and grandchild, I cannot thank you enough, Keep going, you are really helping disabled people and their carers to communicate and understand.

@lolasbian 3 years ago

❤ you cassie, thank you for saying everything that i feel and validating that

@stevenleonard6163 3 years ago

Stepfather of a (and full time patient advocate for a ) spoonie here, let me applaud you for your work, for your courage, and your willingness to be vulnerable. I often accompany her as she interacts with society and observe first hand the reactions of overt discrimination (especially medical "professionals"). And it is usually her who restrains me from expressing my outrage at the ignorance, and gaslighting.[Wanting to avoid bad outcomes - I just want to verbally (sometimes physically) react vs her more rational and much delayed responding).
It was 5 years before she was properly (partially) diagnosed (she too was misdiagnosed w/ IBS) and even then we were not informed until we demanded the ER hospitalist read her charts before discharging her w/o treatment. He then informed us that 3 months earlier her GI Dr. recorded that he had tested for and "confirmed Gastroparesis (but) of unknown cause. (It was then we began the battle with insurance to authorize treatment--took 6 months and were only successful after changing insurance providers).
I admit that sometimes even I succumb to some these misconceptions (it is REALLY hard to wrap one's head around "Chronic", that this is NEVER going to stop, that she is NEVER going to NOT be ill, that the BEST we can hope for is LESS, less frequent flares, less pain, just less, never NO..., just less.) So thank for this reminder, it helps.

Feedback on the production: The font on the slides is too small, even when I pause the video to read, the positioning of the pause indicator; the double bar, prevents being able to read what is displayed.

@alteredsanctuary2024 1 year ago

This is a FANTASTIC video!
Thank you for being you and helping other spoonies.

@gloriaanngomez3238 3 years ago

ME/CFS RUINED my lifetime ambitions to go into the medical the field. The counselor at the dept of vocational rehabilitation insisted I was just suffering from depression and I was faking the very real physical and cognitive symptoms despite my valid diagnosis by a medical doctor who was knowledgeable in diagnosing and treating the disease just because I wanted to go into nursing. That doesn’t make a bit of sense because the disease was robbing me of what I MOST wanted to do since I was a child!!! She fought me tooth and nail on the reality of my many symptoms and some medical signs consistent with the disease as well. I was really put through the grinder by this horrible person!!! Who in the world would EVER want to endure such a nightmare!!! As you know this is only a small bit of the kind of mistreatment we are forced to endure at the hands of ignorant and unscrupulous people who have the responsibility to help us! Dealing with people who are paid to help you with this disease is a nightmare! And then there’s the actual suffering and disability that it causes as well. Yes, you DO pretend that you are much better than you actually are in order to avoid the criticism and down right abuse of those who are being PAID to help you. At best you are dismissed. NO ONE would deliberately do that. It’s a very painful reality that we face daily. ☹️