Invisible Illness

Imagine waking up each day feeling like your body is waging a war against you. Your energy is gone, your thoughts are clouded, and every movement feels like a monumental effort. For many, this is life with Chronic Inflammatory Response Syndrome (CIRS), a debilitating condition caused by exposure to biotoxins, particularly from mold in water-damaged buildings. Despite its profound impact, CIRS is often overlooked, leaving countless individuals suffering without answers or effective treatment.

For years, I battled an illness I couldn’t name. What started as fatigue and brain fog spiraled into unrelenting migraines, joint pain, and skin lesions that appeared without reason. I lost weight rapidly, struggled to eat, and felt trapped in a body that was falling apart. Doctors dismissed my symptoms as stress or overwork, suggesting antidepressants or lifestyle changes. But deep down, I knew something was wrong.

It wasn’t until I discovered CIRS through my own research that the pieces began to fit. A specialist confirmed what I had suspected—mold exposure from my old dorm room was the hidden culprit behind my years of suffering. The revelation was both a relief and a heartbreak. How could something as commonplace as mold wreak such havoc on my life? And why did it take so long to find the truth?

Biotoxins, particularly mycotoxins from molds like Stachybotrys chartarum (black mold), Aspergillus, and Penicillium, are potent triggers of CIRS. These toxins enter the body through inhalation, ingestion, or skin contact, setting off a cascade of inflammation. For individuals genetically predisposed to CIRS, the immune system cannot effectively eliminate these toxins, leading to persistent symptoms that worsen over time.

Dr. Richie Shoemaker’s groundbreaking research reveals that biotoxins can disrupt immune function and cause neuroinflammation. This explains the brain fog, memory loss, and debilitating fatigue that many sufferers endure. Yet, despite these findings, awareness of CIRS remains alarmingly low, even among medical professionals.

Living with CIRS felt like walking through a fog, unable to find solid ground. Each doctor’s dismissal deepened my sense of isolation and despair. I questioned myself constantly. Was it all in my head? Was I exaggerating my symptoms? This doubt, combined with the physical toll of the illness, eroded my spirit.

But my story is far from unique. Countless others are navigating the same labyrinth, searching for a name for their suffering. Many are misdiagnosed with chronic fatigue syndrome, autoimmune disorders, or even depression, treated for symptoms but never the underlying cause. This gap in understanding leaves people trapped in a cycle of confusion and worsening health.

CIRS is not rare, though it is rarely recognized. Studies suggest that up to 50% of buildings in the U.S. have mold problems, putting millions at risk. Water damage, improper ventilation, and failed remediation efforts create the perfect storm for biotoxin exposure. Yet, public awareness of these risks remains minimal.

Prevention is crucial. Proper building maintenance, regular inspections, and swift responses to water damage can dramatically reduce exposure. Schools, workplaces, and homes must prioritize air quality and mold prevention to safeguard public health.

Recovery from CIRS is possible, though it requires a multifaceted approach. Jill Crista’s Break the Mold outlines practical strategies to address the physical and environmental impact of mold exposure. Detoxification protocols, such as using binding agents like activated charcoal or bentonite clay, help eliminate biotoxins from the body. Sweating therapies, such as infrared saunas and Epsom salt baths, support natural detox pathways.

Diet also plays a crucial role. Anti-inflammatory foods rich in antioxidants—like turmeric, leafy greens, and omega-3s—can reduce systemic inflammation. Equally important is mold remediation in living spaces, using professional removal techniques and HEPA filtration to ensure a safe environment.

The fight against CIRS extends beyond individual recovery. Dr. Shoemaker emphasizes the need for better diagnostic criteria, including biomarkers like C4a, MMP-9, and TGF-beta, to identify immune dysfunction. Public health initiatives must prioritize mold education and prevention to address the root cause of this silent epidemic.

The costs of inaction are immense. CIRS diminishes quality of life, increases healthcare expenses, and impacts productivity. It is a public health crisis hiding in plain sight, and it demands immediate attention.

CIRS taught me the importance of listening to my body and advocating for my health. But more importantly, it revealed the urgent need for awareness, education, and change. No one should endure years of suffering without answers. By shining a light on this invisible illness, we can empower others to seek the care they need and prevent future cases.

Chronic Inflammatory Response Syndrome (CIRS) is more than a medical condition; it’s a call to recognize the hidden dangers in our environment and take action. Together, we can break the silence surrounding CIRS and create a world where no one has to suffer in the shadows.

#mold #CIRS #InvisibleIllness #ChronicIllness

Been trying to get switched over to SubQ infusions with an Immunologist at Emory since another Hematologist has left where I live. My chest port has stopped flushing again also. I’ve been on antibiotics a lot recently & I’ve got an inflammatory infection in my pelvic region. Last time I wound up in the E.R. with similar symptoms they just treated it as a UTI & ruptured ovarian cyst. I now know it wasn’t that although I do have cysts. It’s just one thing after the next. Please lord grant me the strength to get through this, please? Amen #CommonVariableImmuneDeficiency #InvisibleIllness #RareDisease #ChronicIllness

CIRS has stolen the past few years from my life, subjecting me to more emotional and academic suffering than I could have ever imagined. Almost costing me my life, and requiring me to place my plans for college and my future on hold.

Despite all the medical procedures, appointments, suffering, supplements, and dietary changes, the most challenging aspect of being chronically ill at a young age, especially in college, has been the lack of support from my friends, peers, and the people around me.

Sitting alone day after day, wondering why most of my friends didn't text or check in. The friends from childhood and high school, who I didn't talk to as often, but had always promised to "have my back”; during tough times, were nowhere to be found.

Spending night after night alone and sick in bed, while my friends were out drinking almost 5 nights a week, “making college memories”; and not understanding why I was denied the good health that all other 20-year-olds around me got to enjoy, despite doing everything in my power to be healthy.

Seeing the photos of my friend group at games, parties, and dinners, I felt a surge of sadness. I was unable to attend any of those events or be in any of the pictures because I was so unwell. My empty space in the photos was an open wound; I’d often cry while scrolling through Instagram, feeling left out and forgotten, wondering when things would change, when I’d get better, and when I’d be strong enough to do all the things I so desperately wanted.

As my Illness progressed over the last two years, my friends disappeared.

My need for support increased, but the amount I received was subsequently decreased. Instead of offering to do things I could participate in, my friend group simply stopped including me in plans. Despite knowing I was too sick to participate anyway, the conscious choice to stop inviting me felt like the worst type of targeted abandonment, on top of everything else I believed I’d already lost.

As I slowly gained back my health and strength, it freed me to begin processing the way others had treated me the whole time I was unwell. When I was so sick and in so much pain, I couldn't use any mental energy. I was too consumed with "the physical", trying every second just to make it through the day.

At first, I questioned myself, wondering if I deserved the lack of support because I was so tied up in my own situation, that I wasn't able to be a “good friend”.

The lack of support continued… and as I finally began feeling healthy enough to participate in some things again I wanted nothing more than to make up for all the times I missed out, but still, my friends never invited me.

Despite going through so much and finally beginning to regain a sense of health and normalcy, I still felt as though I was in the same position as when I was at my lowest: sitting on the sidelines and watching everybody else live life.

I grappled with the same thoughts that I still struggle with to this day; If my friends truly cared about me, they would've reached out. If they truly missed me, they would've called. If they had felt like something was missing from the group because it wasn't there, they would've made an effort to include me. None of these were done. So where does that leave me?

I was left feeling hurt and shocked by a deeper absence of empathy than anticipated. I've read that one reason many people are grateful for their illness is that it's shown them who their true friends are. But what do you do when your illness proves you have almost no true friends?

This reality is something I'm attempting to reconcile with as I continue to move forward.

Until my illness struck, I was seemingly content with my friendships.

I hope I'm never so sick again that my friendships are never again tested that way, but I still don't know if I'll know whether future friendships are true or superficial. I'm still struggling to come to terms with the fact that this disease has cost me most of my friendships. I’m still struggling to overcome some of the hurtful comments said to me. I'm still struggling to accept that when I was deathly ill and close to losing my life, almost no one was there for me.

Through this, I've learned that people, especially at a young age, don't like or don't know how to talk about illness. Most seem to find these conversations uncomfortable, or scary, and it remains poorly misunderstood by the public. The lack of support I received has not just come from my friends but from doctors, the healthcare system, and universities.

I think it's hard for anyone to know how to respond in this situation, and I still try to believe that even though I've been let down, those people still care about me. I can honestly say that I wouldn’t have known how I would’ve responded had one of my friends been in my shoes.

This has allowed me to tap into my deep reserves of self-reliance and strength that I didn't even know I had.

Once I got over the shocking reality of my friend's inability to be there for me, I've mostly been able to make it through by relying on myself.

As much as it hurts at times (most times), it reminds me how much I’ve learned to love and respect myself.

Most importantly, it has taught me that speaking about tough topics like CIRS is incredibly difficult and can seem impossible. But what's the point of feeling like nobody understands you if you don't try to help people understand?

Of course, this comes with some moral "guidelines," yet I still believe that doing what you can to spread the word within your own comfort level is important. If you're reading this now, I know you understand, and I sincerely hope you find your strength to do the same.

#CIRS #MentalHealth #ChronicIllness #InvisibleIllness

I have been feeling really under appreciated at work lately but also on the defensive. Due to my lupus I have an arrangement with my boss that allows me telework after working outdoor events or if I’m having a flare. Well that’s been happening a lot lately but I try to go in the office at least once a week. Anyways to get to the point of my story, when I’m on the office I get comments like “Oh you’re here, I wasn’t sure you still worked here” or snidely “Where have you been?”. It’s so hard to not get snarky because when I’m not at work I’m either in bed or at a doctors appointment or in the hospital. That’s it! I have to use all my PTO for my illness. I don’t get to take a week off for a vacation nor could I afford one since being sick is so expensive in the U.S.

Has anyone else experienced similar social situations?

#ChronicFatigue #ChronicPain #Lupus #AutoimmuneDisease #Ableism #InvisibleIllness #InvisibleDisability #SayTheWord

Lately, I've been immersing myself in TikTok videos that focus on the concept of a "glow up" for women. It's prompted me to reflect on the multitude of beauty products I've felt compelled to purchase in order to attain the idealized version of myself that exists in my mind.

At first, I began compiling a list of these products, but then I paused. This pause represents progress for me because, in the past, I would have undoubtedly succumbed to my insecurities and purchased every single item.

My appearance has been a source of insecurity for me, especially considering that I was unwell for a period of three years and I'm still in the process of recovering. Consequently, I have scars and lesions that don't align with the societal standards of “beauty.”

I often find myself striving to meet the expectations of others, as well as my own, regarding my physical appearance.

However, I don't resemble the individuals I constantly encounter on social media. While I recognize that these influencers likely have imperfections too, I refuse to feel ashamed of my own scars and the decision not to conceal them.

Over the past three years, I've managed to shed a significant amount of weight. But in the past year, I’ve experienced a weight gain.

Assessing my progress becomes challenging when it feels like I'm regressing compared to the people around me. It often feels like taking a step backward rather than moving forward.

Despite these challenges, I am gradually gaining a better understanding of my physical needs and identity. Such self-discovery doesn't happen overnight, particularly for someone who has endured chronic illness.

Ultimately, the emotional aspect is what truly matters, and I'm grateful to acknowledge that I've made substantial progress in that regard.

The societal pressures and expectations imposed on women concerning their physical appearance, behavior, and identity can often create a sense of burden and constraint. It is unjust that society tends to prioritize a person's looks over their accomplishments and character.

I firmly believe that every individual possesses their own unique beauty that goes beyond physical appearance.

If you are currently facing challenges and still persevering, you are displaying a strength and resilience that is truly admirable.

I want to remind you that you are strong, resilient, and powerful, regardless of what society may suggest.

Your commitment to personal growth and development sets you apart, and I hold deep respect for your inner strength and beautiful spirit.

Keep moving forward, and know that you are valued and appreciated for the incredible person that you are.

#CIRS #MentalHealth #Feminism #Empowerment #mold #Selflove #ChronicIllness #InvisibleIllness #Anxiety

I want to express my admiration for you. If you are taking the time to read this, it shows that you are committed to your personal growth and well-being. Whether you are facing your traumas during challenging times or in the process of recovering from them, your determination is evident.

It's important to remember that your experiences do not define you. Instead, it's how you respond to and process the pain that can lead to a better life.

Regardless of the hardships you've faced or are currently facing, it's crucial to prioritize self-respect and self-love, even if it feels daunting at first. I understand that it's an ongoing struggle, but I sincerely hope that one day you will fully believe in your own worth.

It's essential to recognize that vulnerability is not a sign of weakness or fragility, even when it seems like everything is falling apart. If you find it hard to believe right now, that's okay. I understand that my words may seem like just another generic message of encouragement, but I assure you, they come from a place of genuine strength.

Your ability to overcome your weaknesses is a testament to your inner strength. Learning to love yourself comes after forgiving yourself for how you coped in survival mode. It's not a reflection of who you are as a person, but rather a testament to your resilience and your decision to prioritize self-care and peace.

Regardless of your current circumstances, your personal strength is remarkable and deserves recognition. You have survived, and that makes you a survivor. Embrace and celebrate the person you are now, as well as the person you are striving to become.

#CIRS #Grief #Trauma #MentalHealth #ADHD #InvisibleIllness #vulnerabilty #Selflove #aletterto #ChronicIllness

I was always a person with a specific idea of success.

I pushed myself in all my classes, in extracurriculars, and at home.

My belief system that I had built around me told me that if I wasn’t trying to be the best at everything, then I wasn’t trying at all.

I had such impossible expectations for how I looked on paper, that my physical health had begun to take a toll.

The year before I left for college was when everything began to unravel.

With a loss in the family, graduating high school, and the oncoming stress of college, I was no longer taking care of myself as my body started to become sick.

Arriving at college, my body became much sicker.

It was so easy to simply measure it up to anxiety, or the new harsh and competitive environment my body had been thrown into; as well as listening to the doctors who were telling me the same.

One month into school I got a sinus infection. Two weeks later I got covid, only to get covid again only 3 months later.

In between was a never ending spiral of doctors appointments, missed classes, days filled with misery, sleep, and doctors appointments.

Throughout this time I was also diagnosed with anxiety, depression, and ADHD.

My roommate and I were both suspicious of mold in the room.

After multiple tests came back positive for mold, we sent in a formal complaint with the school. 

Christmas break I hoped would be enough to recharge me and begin with a fresh determination. But as time passed, I only felt sicker.

The pain had worsened to the point I knew I would not survive another quarter.

I felt a part of myself die that day I decided not to return.

I felt that in a way I had failed.

Like I had failed college, my classes, but even more I felt i had failed myself. 

 In late January 2022 I spent the night in the ER after having covid for the second time and being debilitated constantly.

What happened that night was something I look back on as traumatic as they dismissed my symptoms as anxiety… and tried to move me into a mental facility.

I felt unheard, abandoned, and broken when they dismissed me without any answers.

After that I spent the rest of my time at home trying to recover both physically and mentally.

Being at home for this year was lonely and empty.

I’ve always loved school – I love the idea of going to class and learning new things and challenging myself.

I wanted to be at school with my friends, taking classes and making progress.

Instead I spent most of my time in bed.

I grew sicker and sicker, going to doctor after doctor.

I spent my year on the living room couch, unable to do simple things such as be outside, make my own meals, and operate how I once did. 

After 8 months of doctors appointments, we found answers last fall.

I was diagnosed with Chronic Inflammatory response syndrome. (CIRS) A biotoxin illness caused by environmental toxins, such as the mold that grew in my dorm room. I have spent the past 6 months detoxing, recovering, and trying to heal.

Things change when people find themselves immersed in the unstable world of chronic illness.

The quality of my life changed dramatically as I struggled this year. It opened my eyes to the boundless resources that lie hidden, deep inside each of us.

My idea of success was once something reflected on a piece of paper, but now I realize it is so much more.

I am stronger than I realized, more capable than I ever knew, more creatively resourceful than I ever imagined, become a more compassionate individual, and I have become more inspired to become a light for someone’s darkness. 

Beyond all that, I am also re-learning things I’ve learned in the past. I’m learning how to be a good friend, sister, and daughter.

I am learning I am the sum of my past but also my current actions and my goals for the future. Every stage in my life, every door that has opened or closed has taught me something that has made me the woman I am today, and whether you know what happened to me behind that door or not, it shaped my life forever. For as Kaci Diane one said;

“I love the person I’ve become, because I fought to become her.”

#CIRS #ChronicIllness #InvisibleIllness #mold #biotoxin #biotoxinillness

Those of us with invisible chronic illness...Anyone else feel more validated when you actually have a cold/flu? Symptoms are very apparent, measurable, and relatable with the rest of the healthy people. Fever, runny nose, sore throat, cough - like I don't feel like I have to make my case that I'm sick.

Is this a weird victory?
#InvisibleIllness #ChronicIllness