I’m currently stuck in decision paralysis mode. I want to be doing something productive while disabled and chronically ill, but that something has to fit into the narrow confines of what I am ABLE to do, not what I feel I SHOULD do. I also want that something—which I use my precious, limited energy for—to somehow generate a little income, because it’s important to me to have a little independent financial stability in my life. Yet somehow, this feels impossible when you’re dealing with the current crapshoot of a gig economy. Needing to always be “on” and perform to get noticed just feels far too fake for me. I really dislike living in a country where the most vulnerable continue to fall through the cracks.

Anywho, I don’t know what I will do. I enjoy making things with my hands, have way too many ideas looping in my brain, and currently do online business managing for one client. I’ve gotten so depressed that I may resort to streaming video games in hopes that I can find a small corner of the internet for the ones who need a place to just “be.” That’s what I know I’m good at—creating safe spaces for ones who want to feel less alone in their struggles. I also just want to make beaded bracelets, or sarcastic stickers, or support boxes; so many decisions with not enough brainpower and physical energy to currently do any of it.

If only others knew how lucky they are simply not having severe depression or ME/CFS, among many other ailments. All I want is to be able to work a steady job, and yet so many take that for granted. Chronic vertigo sucks. Anyway, I’m probably going to try and spend the rest of my day recreating our house floor plan in the Sims and organize where our furniture will go. Shit, even just writing that out seemed exhausting. Whatever; if I cannot do that, then I will just do some “couch care,” as I refuse to say “couch rot.” If anyone is currently interested in checking out my t-shirts or grabbing a free wallpaper I’ve created from last year, check out my site:

Check out my site!

Just know, you’re not alone.

This post will be a short ramble today as I continue to deal with my chronic illness flare-up over the past week. The vertigo is loud, and I’m just so exhausted with the constant tirade of negativity happening in this country. More and more of the bare minimum of help is being stripped away from the most vulnerable. As you can tell, being ill myself, I’ve dealt with some of those social systems throughout the years, and it enrages me that the ones at the top believe somehow that’s “too generous” for those struggling to survive.

Not to mention the fact that now we have the world’s first trillionaire, while so many still go without the basics to live and thrive. Congrats, bro; I hope that helps you feel better? It should be a crime against humanity to have a trillionaire anywhere on planet Earth. It’s unfathomable to me that anyone would be proud of that; it’s embarrassing and, frankly, shows the failure of morals within the human species. No one person should ever have that much when billions of individuals have so little. Anyway, yeah, I’m a progressive and I’ll leave it at that.

Since I can’t really think anymore and I’m so tired, here’s a short poem:

What happened
To the human race
We forged ahead so fast
Now stuck at an unsustainable pace

We used to care about one another
It’s how we survived our early days
Whatever happened to those communities
Lost in so many ways

So much fighting and disagreement
Yet we forget we are interconnected
The top 1% is just using us for their gain
While we become less protected

They say there’s power in numbers
But how do we continue to fight
When we’re so fucking tired
And I often lose my own might

I just want a peaceful existence
Life is just so short
Can we go back in time
And make ourselves a pillow fort?

Check out my Linktree for more!

I mentioned in a previous post that I am working on more self-compassion and reciting my favorite statement, “It’s not your fault you’re sick,” and it’s been helping a lot! With this, I’ve also noticed that I’m becoming more aware of what my body needs instead of what my brain wants. So when I’m exhausted, I no longer try to push through my illness as a way to compensate for what I think I “should” be doing.

While this has been helpful and is slowly moving me toward accepting the fact that I am indeed disabled and chronically ill, I do find myself in a tug-of-war when it comes to what is avoidance and what is self-care. I originally believed that any sort of rest was unproductive, and therefore thought I was avoiding doing what I needed to do to be “productive” in our society. This belief was so damaging to my own mental and physical health, as our current society is not built with chronic illness sufferers in mind at all. We are outcasted as ones who just don’t try “hard enough.” It’s super important to me to feel financially independent, yet when you’re this ill, that can feel more like a dream than a reality. It’s a rope I’m learning I have to drop if I ever want to let myself heal.

I created a business last year called GlowGrit Collective. It’s a mix of the inner healing work (the glow work) while also screaming into the void about the harsh realities chronic illness brings (the grit work). I have so many ideas about where I want to take this and what I want to provide for others so we can feel less alone. I started with eight t-shirt designs which are back up on my Etsy store, as I just re-opened after a long break. However, this is where I’m struggling most with self-care vs. avoidance.

There are days where I’m just so physically exhausted, I make zero progress on my business. Then there are days when I’m so mentally overwhelmed, it turns into decision paralysis and I get nothing done. I’m a Type A person and one that used to be a huge perfectionist. When the “what-ifs” come into play, I am learning this may be OCD creating avoidance—keeping me from even attempting a project that may fail. So, if I avoid starting it, I avoid failure and wasted energy. It makes sense that my brain may try and protect me from that.

The result? Nothing happens. I don’t move anywhere with my business and I’m still stuck in these never-ending loops of ideas with no action. Then I quickly burn myself out and need even more rest. While I’ve been giving myself more of that rest, I’m also realizing it continues to ask for more and more. So, what part of this is depression taking a bigger hold and creating these avoidance patterns, disguising themselves as self-care and rest? At this point, I don’t really know, but I’m really hoping I can figure this out soon. I want to make a difference in this world in ways that I can, but damn, it sucks when you aren’t as functional as you used to be.

Make sure to check out my site: www.glowgritcollective.com, to help support my work and my wild future endeavors! I appreciate you all in this crazy journey of life.

If you read last week’s article, you’ll know just how much I struggle with giving myself any type of self-compassion or even just letting myself off the hook every once in a while. It’s been almost a year since I first bought and started filling out Kimberley Quinlan’s The Self-Compassion Workbook for OCD. I made it to Chapter 4 before realizing that this is not resonating at all with me. The whole “what would you say to a friend who is struggling” unfortunately also never really resonated with me either. I felt this was something I was going to have to try and figure out on my own.

Cut to about three weeks ago, when my neuropsychotherapist mentioned printing off a picture of myself when I was younger. She explained that I should put it on my bathroom mirror and each morning while getting ready, say something nice to young me. Perhaps something I know now that I didn’t quite know then. The first week, I really struggled with this. Whenever I looked at that picture of younger me, I felt so disconnected from her, almost like I was a stranger to myself after all these years. The only thing I could offer was, “You have no idea what’s coming in life.” Not very compassionate, is it? So I began thinking, “Why can’t I just be kind to myself? What am I missing here?”

I began to rephrase what I wanted to say to that younger me. It was no longer just something nice. Instead, it became what I needed to hear from either others or even myself at that age that would have made me feel safe and supported. While I had a great support system that recognized when I was struggling, chronic illness can absolutely make you feel like a burden on those people closest to you. Turns out, it wasn’t about others, but more about myself. I grew up not really trusting my own body; therefore, I never truly felt safe in it. As I came to that realization, I noticed there were three main phrases that allowed me to see myself as me again, and not as a stranger. I have been reciting the following to myself every single morning:

“You are worthy.”

“It’s NOT your fault you’re sick!”

“You are resilient.”

I added that last line as it’s one thing that I have been able to see the truth in, as I have been through so much over my lifetime that I never gave myself the credit for enduring.

This is the start of my self-compassion journey and I think I’m at a good starting point. My goal here is to reconnect with myself so that my brain and body reconnect as well. This also means respecting what my body is trying to tell me. Whenever I’m exhausted, I would push through and try to “outwork” the sickness. I’m learning that stopping and listening to what my body needs instead of what my logical brain wants is a big step towards offering self-compassion. When I’m not feeling well enough to do something, I’m able to say no and not blame myself or feel guilty for it anymore.

As of right now, I see self-compassion as choosing myself after all these years of blame for not being able to do this or that. Comparison is a thief of joy and it’s only natural that we do compare ourselves, but I’m realizing my circumstances are different from others. It sucks that I have to live this way, but this is why I’m here, writing about it. I know I’m not the only one struggling with this and I’m here to tell you, while learning to love ourselves again may not be easy, the alternative is far more harmful.

While these were clearly observations of what was happening in my life, they were also comments externalized toward me, which I eventually began to internalize. Soon enough, I began to blame myself for being ill. I would constantly ask myself, “Why can’t I just be normal and not always sick?” Of course, this led to, “I hate that I’m like this and can’t do things like everyone else,” which spiraled into, “I hate myself.”

It’s hard when chronic illness seeps into your daily life and feels fused with your body and mind. It’s like an itch you can’t ever scratch and a pulsating headache you can’t quite clear. Diagnosis after diagnosis—following many misdiagnoses—is beyond exhausting. You even begin to feel like a burden to the medical system, when they are the ones who should be helping you get better. Having doctors explain that you’re a “complex and complicated individual” who isn’t a simple “textbook case” certainly doesn’t radiate confidence. Like, sorry I’m such a challenge of a human, I guess?

It’s no wonder I began to look inward and blame myself. I felt like nothing but a nuisance. I felt like I was just bothering the professionals who were supposed to be on my side. Eventually, some doctors began telling me it was “all in my head” (which it wasn’t), so I took their words to heart and sought therapy.

I’ve been in therapy, on and off, for the past 25 years. For the last year, I worked with NOCD (for my OCD), thinking it would solve a lot of these odd neurological symptoms. I’ve done excellent with my ERP treatment, yet the physical symptoms persist. So, I have now sought out a different therapist to help me with the severe depression that has apparently existed my entire life and gone unnoticed. Who knew that constant negative self-talk and critical narrations in my head were actually depression? I mean, also, who wouldn’t be depressed when having to deal with all this? I know my chronic illness baddies out there understand these feelings all too well.

Anyway, I’ve slowly started to gain some footing in the self-compassion department. I will explain more about this in my next post, as it’s been quite the journey to allow myself even a sliver of grace. It took over two decades to realize that beating myself up and hating myself over my illnesses was not productive—who knew!? That sometimes you can’t just overcompensate by pushing yourself to pure exhaustion every day to try and prove you’re not that sick!?

So for now, I’m slowly starting to unravel the self-hatred and blame that I have held onto for so long. I will leave you with one affirmation that, in the beginning, had me crying every time I recited it: “It’s not your fault you’re sick.”

Damn, that still hits so hard every time.

Here I sit in creative expressions group
Wondering if I’ll have enough to say
Yet when I read the prompt that was posted
My thoughts refuse to go away

It’s called a wind phone
A way to speak words left unsaid
So very interesting
Used as a one-way call to the dead

Old rotary phones placed randomly in nature
It can become a peaceful place to heal
One more chance to say I love you
Or just however you truly feel

We always talk about depression
Something I know all too much
However, we barely research grief
One which can be similar and such

I often wonder, what came first for me
Depression or grief
For a long time I thought it didn’t matter
Yet both have been a time thief

All these years felt deeply
Lost to illness and pain
Now I sit with depression
And try not to complain

I’ve begun the healing process
Having to say things to young me
I wonder if the wind phone
Would help me just be

Perhaps it could be grief underlying
Finding my way from anger to hope
Accepting of a life I never had
Would be a healthier way to cope

A simple phone, unplugged
To help process our emotions
Or to say your final goodbyes
The wind phone, quite the notion

If you’d like to learn more about the Wind Phone, you can find more information here: Smithsonian Magazine Article

For anyone reading this, I am now in therapy for my severe depression and will be reaching out to my doctor to see if there are any medications that could help take the edge off. As I think back, I wonder what Jess looks like without the depression that has kept a thick black cloud over me my entire life. I honestly thought the self-criticism and negative self-talk were just a part of who I was. I used to make jokes at my own expense, not realizing just how damaging they became. What’s even worse is the fact that it went completely unnoticed by medical professionals for over three decades. Lovely medical system we have here.

This article is going to be quite the exposure for me. It will be imperfect, unorganized, and probably a bunch of rambling. I’m currently wrought with chronic fatigue, and my dizziness and vertigo have been turned up a notch or two because of the current stressors. I always try to push through my physical and mental illnesses as if I can “work” my way out of this. So far, I have failed in those endeavors. All that has done is exhaust me more and create more self-hatred as I continue to compare my situation to others who are able-bodied and do not have Functional Neurological Disorder (FND). Ugh, even just typing that last bit out makes me super uncomfortable. I am so resistant to even acknowledging that I have a disability, but I’m slowly working on that, too.

When I volunteered as a crisis intervention responder during the pandemic, I always ended each chat with, “Please be kind to yourself.” Why can’t I just take my own damn advice? Why can’t I show myself the same compassion I easily show others? I know a large part of the self-hate I conjure up is due to my physical health issues. However, now I’m wondering how much of this hatred toward my physical health is really just my depression masking—hiding in the shadows so it can continue its crusade against me. Hopefully, healing some of this depression will help heal some of my nervous system.

While our current society wants us to be desperate, unhappy, and purely surviving, I long to be that rebel who begins to love and heal herself. Capitalism wants you unwell so they can sell you the cure. I refuse to partake in this mess anymore. And yes, sometimes my posts will be political, because it affects me daily being chronically ill and disabled. If you happened to read this entire post, you’re fucking awesome and I appreciate you.

While I have “names” to put towards my many different mental and physical illnesses, there are a few which have evaded even the best of doctors. The first is my chronic vertigo, which has me completely non-functional on the worst days, and painstakingly annoyed and frustrated on the “good” days. The second is my liver, which some days gives me a lovely tint of yellow and a nagging pain in my upper right abdomen and shoulder. Last but not least (since it reminds me every day) is my thyroid gland, which is twice its size and lovingly makes it feel like I’m constantly being strangled.

Perhaps I’m afraid to get old because I’ve already witnessed the type of treatment you receive in our crumbling medical system. The many frustrations of taking time out of your day to sit in a doctor’s office, often waiting far past your appointment time, just to be seen for a couple of minutes. Maybe it’s having to go through various unpleasant medical procedures more times than I’d like to admit. Or having to exhaustingly advocate for yourself so doctors end up looking beyond just your medical records. The cherry on top are the looks and comments I typically get from elderly individuals in the waiting rooms: “You’re too young to be sick.” Yeah, you’re telling me.

Over the many decades of being unwell, comments from those in my immediate environment were often hurled my way. Some would say, “Jeez, if it’s not one thing, it’s another” or “You’re always sick, you should live in a bubble.” Coupled with a capitalistic society that does not see chronically ill and disabled individuals as valuable, at some point you begin to internalize your illnesses as if it’s something you caused yourself for some reason. You know, because we chronically ill just loveeee to be sick. Then comes the blame and guilt. The guilt of not being able to do the same things as my peers, even as far back as middle school. The blame that I still place on myself for not being able to just “fight through it all and get better.”

It’s been decades of fighting just to get well. I’ve gone through multiple procedures, surgeries, therapies, etc. I’ve utilized both Western and Eastern medicine to try and blend complementary care. I’ve improved in certain areas, but still have a long way to go in others. I’ll be honest, part of me is scared of getting well, because I don’t know what that feels like. OCD does not like the unfamiliar or uncertain, even if it could be positive. However, the hopelessness that has been setting in lately is becoming a lot to bear. I do believe a big reason for my “extremely severe” depression (as my assessments say) is less of a core issue and more of a symptom related to my ongoing despair with having to live in a medically complex, unwell body.

Since I have a lot to say about all of my illnesses in hopes that it could help even one person out there, those will be separate articles, so stay tuned. If you also deal with chronic illness and have been told by doctors that you’re just “too complex,” I’d really love to hear from you.

I’ve always been a Type A person, driven and motivated, but invisibly wrapped up in a bundle of nerves. OCD definitely played a part, with perfectionism being one of my chronic, main themes. And ever since I can remember, I’ve been self-critical and always saw the glass as half empty. I grew up with the mentality that somehow, punishment equals motivation. If I just beat myself up enough, it will motivate me to work harder and succeed. Fast forward a couple of decades, and all I have to show for that is self-hatred and a Bachelor’s degree.

I guess I never truly realized how some of these traits I used to admire were actually symptoms of depression. I attend OCD support groups frequently, and it wasn’t until my Depression and OCD group that the host mentioned negative self-talk and how it’s usually the depression talking. It was like he was speaking directly to me. For me, there was a bit of confusion over the depression diagnosis. I laugh and sing, and I have fun playing video games, so how can I be depressed? Well, it was never slapping me in the face. It was more of an underlying flame that slowly and quietly grew over the years. Eventually, it became too big to ignore or mask—even from myself.

Things started to get really wild when my grandmother died last November. She was my last living grandparent, and once that happened, my depression became loud—almost louder than the constant tinnitus ringing in my ears. I figured it was a mix of grief from a loss, my OCD ruminating on death (my core fear), and my lovely, right-on-time seasonal affective disorder kicking into high gear. So, when springtime rolled around and we sprang forward an hour, I was waiting for the mood to lighten. It never did. In fact, it’s become heavier than ever—clinging to me like a polyester throw blanket filled with static. No matter how much I try to shake it off, it just keeps sticking to me.

So as of recently, I’ve begun writing again. I will say I used to write back in the early days of Tumblr (I may have just aged myself). It was cathartic and helped me process my thoughts. Though some felt I overshared, which got me in my own head, so I stopped. Fast forward about 18 years, and I’m back. I want to write to get certain things out of my head so my OCD doesn’t continue to play them on loop like one of those old-fashioned HitClips (yeah, I’m a millennial, and I had at least five of those babies). You know, the ones where you were graced with only one minute of a hit song and then you’d have to replay it over and over again. We thought we were so cool!

Anyway, it’s something like that, except I don’t want to be graced with any of these thoughts anymore. I figure if I can give it the space it wants or needs, I can begin to heal. I really hope I’m right about this one.

I guess this is depression, then. It’s when you feel frozen mentally and physically drained after just sleeping. It’s when you have to fight your brain just to take a shower or clean, well, anything. I still find moments of laughter, and my husband, Nick, is a big part of that, but deep down there’s still this unease of unhappiness and struggle. If any of this resonates with you—first, I really wish it didn’t. But if it does, just know I’m sitting next to you, and you’re not alone.

I’ve been internalizing and blaming myself for my illnesses for decades now. It started with hearing external comments about how I’m “always sick” or that I should “live in a bubble.” Eventually, society caught up with me, and when it was time to become “successful” in life, I felt I could never measure up. That’s when I really began internalizing these illnesses, blaming myself for just not being “healthy” enough to do things the “normies” can.

Why can’t I just go work 9-5 somewhere? Society places blame on the individual for something they never asked for. I didn’t ask to be sick, nor did I ever want to be. I never had a say in the matter, but I have to deal with the effects of it, daily.

I can at least thank my college experience for allowing me to realize the best way I am productive is virtual or remote. I do not need micromanaging; my OCD tends to kick my motivation and drive into high gear when I know something needs to be accomplished. It stresses me out to put off anything in life, which is probably why I’m so stressed about my current status—not being able to work the way I want to, and really, the only way I can right now.

This makes me think about the wider community dealing with disabilities. When the pandemic hit back in 2020, and businesses had to adapt to remote work, it opened doors that didn’t exist before. I don’t think many realized just how inclusive remote work was for the disabled community. Suddenly, people who couldn’t traditionally work were able to secure employment. It was a perfect opportunity for those who felt left behind to finally catch up.

Fast forward six years, and those same companies that were all about adapting are forcing employees back into an office that many don’t want to—or in some cases, simply can’t—commute to. It ripped those opportunities away from disabled folks all over again. I, unfortunately, was too ill at the time to secure a remote job. Now, remote listings are a crapshoot, and you’d be really lucky to find one that isn’t some scam or a false posting. It just adds to the job anxiety and creates more burnout for someone who never had the energy to begin with.

How do we survive? In society, if you’re not constantly productive, you look “lazy.” And if you’re not successful with making money, you’re a “loser.” It’s no wonder I still blame myself for not being productive enough, not worthy enough. It slaps me in the face daily.

When you’re chronically ill and have constant dizziness and vertigo that most don’t understand, you end up feeling extremely isolated and alone. The depression hits hard, making easy tasks feel impossible. I don’t have the answer to this, only anger and fear at this point. I’ve always envisioned how life could be if we truly cared about one another and made sure no one was left behind. It feels like a distant utopia I’ll never see in my lifetime.

If you’re still reading this and you’re dealing with chronic illness (physical or mental) or any type of disability, just know you’re not alone. I am here with you in the fear, anger, and sadness as we continue to burn ourselves out trying to survive.

I’m no stranger to this. I’ve been chronically ill for as long as I can remember. I went to college, got my degree, and then — shortly after — stopped being able to work in any traditional sense. I know plenty of people who got a degree and ended up in a completely different field. That’s not what I’m talking about. I’m talking about getting that degree and then watching the door close before you ever walked through it.

Over the years, I’ve adapted. I’ve figured out what I can do, even if it doesn’t look like a 9-to-5. Right now I work remotely as a customer experience specialist for a local creative photographer. I built her client database, set up her Google Forms and Sheets, used code to pull important information into clean, readable Google Docs, and handle client outreach and thank-you gifts. It’s real work. It’s work I’m good at. But it’s not enough to feel financially secure — so I’ve been deep in the job board trenches, applying for remote positions and trying to figure out what’s legitimate and what’s a trap.

That last part is harder than it sounds.

When Indeed sent me an email alert for a position through a real estate company, I looked into it. It seemed real. The people were real — an actual CEO, an actual HR Manager, both of whom I could verify existed at this company. I started the onboarding process.

The red flag came when they asked me to verify my banking information by email.

I called the company directly. Got the CEO on the phone. Told him I’d been in contact with his HR Manager about a job posting. He told me: that was a fake posting.

My heart sank. Then came the embarrassment — how did I miss this? How did Indeed send it to me in the first place? And then the anger, slow and heavy, because I knew exactly who this scammer was targeting. People like me. People who are already vulnerable, already exhausted, already desperate to just survive in a world that wasn’t built for them.

It took two full days to lock down and protect my information. Two days of spending energy I didn’t have, while stress piled onto every physical symptom I already carry. I try to find the lesson in hard things. But sometimes the lesson costs too much.

I’ve stopped applying through random job boards. Now I only apply through company career pages directly. It’s a smaller net, and it stings — because all I want is to feel like I’m pulling my weight. To feel like I belong somewhere that makes sense for how I actually live.

But I’m writing this because if you’re ill or disabled and you’re out there desperately trying to feel financially independent, I want you to know: you’re not alone in that frustration. And if you’ve ever fallen for something like this — or come close — please don’t carry the shame of it. The shame belongs to the people who built the trap.

So I guess that’s why I’m here. To help you feel a little less alone in whatever life keeps throwing at you. And honestly? I’d love to feel a little less alone too.