I have been chronically ill 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, whom I call Muses, because many of them also have chronic illnesses. Going to be talking about some really tough stuff today, so skip this video if you need to. Please take care of yourself.

Watch the video below, or read on for the full transcript.

If you're a spoonie or neurodivergent and are tired of doing things the able-bodied, neurotypical, and toxic way, this is the place for you to be. Subscribe to my channel and hit the bell to be notified when I post a new video every other Tuesday.

Misconception number one, we're faking being sick.

Instead, the truth is, often we're faking being well. Many people who experience chronic illness experience it in such a way that it is always present. There is always something or other or many things going on in any given moment to make us feel ill, to make us feel in pain, to make us feel exhausted. Chronic illness is always with you. If you are someone like me who experiences chronic illness, the chronic part is literal. (laughs)

The way we look does not imply how ill or not ill we are, does not imply how in pain or not in pain we are. You cannot judge how much someone is suffering by looking at them. So instead of me just going on and on about this first misconception, let me share with you some of the things my precious Muses were kind enough to share with me in relation to this misconception.

It is so harmful to not believe someone when they say they're suffering. And for many of us who are chronically ill, if and when we are able or choose to push through our illness in order to experience something, we're gonna pay for those things later. It's not okay to look at someone and then gaslight them by telling them, "You don't look like you're suffering, therefore you are not."

As you can tell by how many of my clients would prefer to remain anonymous, these topics are really risky to talk about because there are so many ableist people out there, not just in the general population but also in the medical field. We experience just as much if not more gaslighting from our doctors than we do by our friends and family, colleagues, acquaintances, strangers on the internet. It is so absurd to think that the only things that can go wrong with the human body have a visible-to-the-naked-eye component.

When I say it that way, can you hear how ignorant that sounds? Where is this audacity for ignorance coming from? In order for us spoonies to live our lives, very often, if not more often than not, we are faking being well in order to live our lives. Because if we didn't, we would be left behind, depressed, suicidal. All that would be left for us is depression and nihilism.

I know from personal experience how hard it is to not let those things get you. And there are still periods of my life where they do. For example, over this past summer, I had a really deep period of depression in relationship to everything that I am only just now starting to climb out of. And it is hard, it's taking a lot of work, but that involves masking.

So, similar to autistic masking, where you're trying to appear neurotypical to other people, chronic illness masking is where you are attempting to appear able-bodied to other people, because you get treated better when you act able-bodied. Just look at the comments on some of my past chronic illness videos, particularly my self-diagnosis video, for evidence of how much hate and bullying there is for disabled people.

All right, misconception number two. We are faking our illnesses for attention, when in fact we hate the negative attention being chronically ill and disabled gets us.

We hate it. It is violent. It is abusive. It is painful. It is terrifying. It effing sucks to be seen as chronically ill, to be seen as disabled, to be seen as a spoonie in this culture. Why would we choose that?

To assume that we choose this for attention is absolutely absurd, because of how harmful that attention is.

It's one thing to fake certain things for attention if that attention is ultimately positive. But if you were to spend just one day in the body of a chronically ill person and experience how other people treat them because of it, you would understand there is no way that we would be doing that on purpose, 'cause the attention is harmful.

And then I know I'm not gonna convince anybody who is ableist and who thinks that way. I know that. I'm gonna get hate comments on this video, I know it. (laughs) I imagine this mythical ableist devil's advocate rising from the ether into my comments section and being like, "You like the negative attention."

No I don't.

The reason why I fell into such a depressive period over the summer is because of two very specific things. One, Roe v. Wade getting overturned here in the United States by SCOTUS. And two, all of the really awful abusive hate comments on my self-diagnosis video. I can trace back my really bad period of depression to those two things very specifically.

I keep a simple journal in my Notion system, and I was able to go back and say, "Oh, when did I stop saying nice things about what happened that day?" And it's very obvious that that video and the overturning of Roe v. Wade were the things that started that for me.

The only reason I have the guts to do this work and to face that negative attention is because if all I can do is change one spoonie's life for the better so they can like themselves enough to care about themselves and feel like their life is worth living, that is worth it to me. That is why I do this work.

I am not here for the ableist abusive trolls. I could care less about you. What you say hurts me, what you say hurts my clients, what you say hurts all the spoonies, and you are not worth my time. But people who are chronically ill, people who are neurodivergent, people who are in marginalized communities, who are suffering, you are worth my time, and that's why I'm here. That's why I do this. Because I understand that I am one of the rare individuals who have the time and capacity and the skill to do this work, so I feel it is my responsibility to. So I will stand in between you and all that hate so you can see that you are worth being stood up for.

All right, misconception number three, there's lots of support available.

Where is all this mythical support? I want it. (laughs) It took me 15 years to figure out my primary chronic illnesses were Postural Orthostatic Tachycardia Syndrome and Ehlers Danlos Syndrome. And I figured it out myself, me, and then I convinced doctors to do that specific testing for me and then prove and confirm and actually diagnose me with those things. And then now that I am diagnosed, help is few and far between.

The truth is, support for chronic illnesses is really hard to find. It's really hard to find doctors who know and understand our chronic illnesses. It is really hard to find insurance that will cover those doctors and will cover the coinciding treatments. And don't get me started on the fact that those insurances are often financially inaccessible for most of us, because we're disabled and unable to work. Most of us are financially dependent on a friend or a family member.

I know I'm financially dependent on someone. I am slowly working towards financial independence. But even though I've been doing this job for a couple of years and I have clients, doesn't mean I'm financially independent, y'all. I'm not. I do, however, now make enough money that I can no longer stay on Medicaid. I have to pay for my own insurance starting in 2023, and that stresses me out.

My marketing isn't, like, locked in. It's not perfect yet, so my month-to-month income is not guaranteed. So suddenly having to spend at least $300 a month on health insurance and then, you know, the appointments and the tests and the treatments on top of that terrifies me.

That vibe of like, you do you, which is particularly problematic right now, during the COVID pandemic. (sighs) We're trying to do us, but so much of what the able bodied people do is actively harming us. When I first became chronically ill at the age of 14, my dominant symptoms were gastrointestinal. I was experiencing constant nausea, abdominal pain, shortness of breath, and constipation. It felt like food poisoning all day, every day, never ending. That's what it felt like.

I was 14 and a girl, so no doctor was gonna listen to me. I got diagnosed with IBS, which is just a cop out diagnosis if you ask me. But what was really traumatic for me was finally being hospitalized at OHSU Doernbecher, here in Portland. And the doctors kept verbally gaslighting me and interrogating me to try to get me to confess that I was pregnant at the age of 14. At that point, I had been experiencing those symptoms for at least two and a half months. And I was terrified, I was a 14 year old kid, scared and terrified because no doctor seemed to be able to tell me what was going on, let alone help me. Nothing was helping. And these doctors had the audacity to verbally abuse me and try to get me to confess that I was pregnant.

Meanwhile, I was over here going, "I've never had sex, I'm not pregnant. I will pee on a stick. I will prove to you I'm not pregnant." And yet they wouldn't, they wouldn't follow through. They were just convincing me.

That's not okay.

Like what the actual heck? I was an innocent child in severe pain and distress. And all you got for me is gaslighting? You're a doctor, you're a team of doctors. That's not okay. And if you know someone who is chronically ill, I bet you they have a bunch of stories just like that. And I bet plenty of them are significantly more severe than that. I know I've got more severe stories, but I don't want to overly trigger anyone watching this.

And on my self-diagnosis video, I even had comments from self-proclaimed medical professionals who were gaslighting and abusing me and bullying me in the comments. And I at that point, couldn't take it anymore, and I said to one of them, "If that's how you treat every person that comes through your office, I can guarantee you have given at least one person, if not more, medical PTSD in your life."

That's not okay.

Misconception number four, there is diagnoses and treatment available for us to live normally.

The truth is, diagnoses and treatment are hard if not impossible to find. If somebody feels up to starting a thread down below about how long it took after your onset of symptoms for you to get a diagnosis, let alone treatment, or if you are still looking, I want people to see the numbers.

It took me 15 years, and I believe the average number of years for someone to get diagnosed with Postural Orthostatic Tachycardia Syndrome is six years, that's the average. Do you know how horrifying that is? Experientially, Postural Orthostatic Tachycardia Syndrome feels like congestive heart failure. That's what it feels like.

Imagine having that for six years straight and everybody saying, "Oh, you're fine." And all it took is one person measuring your heart rate while lying down, let you lie down for long time, measure your heart rate, and have you stand up and then measure your heart rate again within one minute and see that it's skyrockets. That's all it took. It takes less than 15 minutes to spot Postural Orthostatic Tachycardia Syndrome in a doctor's office. But most patients take an average of six years and, many of the people I know, longer. Me, 15 years. I've heard of people who it's taken 20, 25, 30 plus years to find out they have Postural Orthostatic Tachycardia Syndrome.

The doctors who are good at what they do, really knowledgeable, and can help when it comes to chronic illness are few and far between. My primary specialist here in the Portland area is one of the only specialists on my kind of constellation of issues, and I think their waiting list to see new patients is like two to three years long if not more, or closed. It's really bad. So what does that mean for other people with that condition in Oregon? Are they just screwed?

Basically, yes. There is not enough medical expertise and support for the majority of chronic illnesses.

And don't even get me started on the rest of the general population. Support ain't there, people.

Prescription drug treatments tend to only exist because a pharmaceutical company has deemed that problem to be profitable enough to solve. Just look at insulin prices in the United States, and you'll understand how capitalism and profitability margins tend to be more important for medical advancement than actually helping people. Regardless of whether you're in traditional western medicine or you're in naturopathic medicine, or alternative medicine, there are good doctors and then there are really bad and harmful doctors in all of those categories.

Finding a good doctor who cares about you, will treat you with respect and compassion, that's hard enough. Finding someone who is then also knowledgeable and can diagnose and then help you? Diamond in the rough territory.

We do not choose to be chronically ill for attention. The attention is bad, and the experience of being chronically ill is miserable. No one who truly can empathize with what chronic illness is, what that experience is, could possibly fathom faking that.

Misconception number five, spoonies are selfish.

It's all, we're just expanding on the same theme. This misconception that spoonies are narcissistic people, faking it for attention. When the truth is for this one, spoonies are some of the most compassionate and selfless people you will ever meet.

I have not met a single person who is chronically ill who was a bad person. I know it's possible, but I meet a lot of spoonies in this line of work, and it has been an honor to meet each and every one of you. You're wonderful people, and you do not deserve the treatment you get by anyone - strangers on the internet, abusive doctors - you all deserve the best. And I am so sorry that we are in this mess, 'cause it sucks.

The audacity to choose someone's boundaries for them and then shame them for not rising to those expectations is so not okay and not cool.

Stop being ableist, people, it's not a good look.

All right, if you're up for it, we're about halfway through. I would love to hear about your experiences with these misconceptions I'm talking about today. Share your stories in the comments below.

All right, misconception number six, we're just stressed.

We are involuntarily resilient. I mean, yes, we're very stressed. We are undersupported, abused, and in many instances worry about having enough money to have food and shelter, let alone medical care. So yeah, we're fucking stressed. But is that the reason why we're not feeling well? No.

All right, misconception number seven. Our illnesses and disabilities are our fault.

This one makes me so mad. So this is like the logical progression. It's like, okay, fine, you're not faking it. Let's say an ableist person manages to get over that baby step. You're not faking it. Then often the next conclusion is, "Well then, you must be making it happen. It must be your fault. There's gotta be something you are doing to your body." Or, just gonna dip my toe into religious trauma real quick. "Or you're sinning, you're sinning." Whatever that happens to look like for your religious beliefs. Spiritually you are doing something to bring this upon you. Therefore, it's in your control. It's your own fault that you are sick.

That is so fucked up. It's not okay at all.

The truth is that if it was under our control, if there was a light switch we could flip to feel better, we would do it. It sucks being chronically ill. It sucks. If there were something really easy for us to do (boink) just fix it, we'd do it.

We are not faking being sick, we are faking being well, because we get treated better when we're mostly well, a tiny bit sick.

If we were 100% honest and transparent about how poorly we're doing, all that does is bring upon us the shame and the gaslighting and the abuse and the hate and the bullying. We're not faking being sick, we're faking being well in order to protect ourselves.

All right, misconception number seven. Chronic doesn't actually mean chronic.

Truth? Chronic is literal. Chronic means all day every day. No end in sight. ♪ It never goes away ♪

All right, misconception number nine, we're lazy.

The truth, we're disabled.

We are not stuck at home all day by choice. It's because that is the only option. (sighs) Do you know how depressing it is to be at home all day every day and your only experience is your chronic illness? Do you know how depressing that is?

We do not choose that experience. It sucks.

Last but not least, misconception number 10, disabled is a bad word.

The truth, disabled is a morally neutral descriptor. Those who treat it otherwise, who treat it as a moral descriptor, are ableist, harmful, and abusive. Being disabled does not mean you are a bad or morally reprehensible person. Being disabled does not mean that you have done bad things. Being disabled does not mean that you are at fault for being disabled.

All of the misconceptions that I've spoken about already, when you take the misconception as truth, you arrive at disabled is bad. But when you look at the truths that I have spoken to today and you really allow yourself to see them as truth and to understand them, you become capable of seeing the overwhelming amount of suffering and lack of support that disabled individuals receive.

We are involuntarily resilient because that is the only way to be in our culture.

Disabled is not bad.

There you have it, 10 misconceptions about chronic illness. Thank you for listening to my rants, my never ending rants. And I realize this was a really tough video, and if you're still here with me, thank you. If you're still here with me and you want to go harass and bully me in the comments, I will block you.

If you're curious about what I do, I help neurodivergent spoonies who are done feeling like a failure and a burden go from doing things the neurotypical, able-bodied, and toxic way, to mastering a toolset for genuine self-care and a bias toward action, so they can finally believe in and trust themselves enough to spend their precious time and energy the way they want.

The main way I work with clients is through my signature course, The Action Navigator. It's packed to the brim with tools and techniques for mastering your time, getting organized, and offering yourself radical compassion as a neurospicy spoonie. If that sounds like exactly what you've been looking for, use this link to learn more.

Check out these videos next if you're curious to learn more about my chronic illnesses, POTS and Ehlers Danlos Syndrome.

If you like this video, hit that Like button and subscribe and be sure to share it with your friends. I'll be back in two weeks with another video. See you then. Bye.

10 Chronic Illness Misconceptions | Invisible Illness Edition