Support Robert's Battle Against Long COVID, POTS, ME CFS

TL;DR:

I’m Robert, 42, a former international school teacher who has been battling Long COVID, POTS, and ME/CFS for nearly 5 years. This illness has taken everything—my health, home, savings, career, and independence. I’m now facing severe financial hardship and need urgent help.

I’ve lost access to critical health insurance and can’t afford essentials like food, transportation, or medical care. I’ve been denied disability benefits and have defaulted on debts, all while my condition continues to worsen. I need to return to the U.S. to see my Long COVID specialists and regain stability, but I cannot do this alone.

Your support will go toward:

Even sharing my story means the world to me. Thank you for any help you can provide—it truly makes a difference.

Some news articles about my experience:

CBC News - April 2021 - 'A shadow of myself'

Yahoo Life - March 2024 - Living with Long Covid

Some of my students in Singapore

With my classmate at graduation from my Master in Public Policy from National University of Singapore in April 2016

With my last group of students (grade 2) and last time I was able to work - Canada - June before moving to US in September 2019

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LONGER VERSION

Hello,

If you don’t know me, my name is Robert. I’ve been battling the devastating effects of Long COVID (Post-COVID Condition), Postural Orthostatic Tachycardia Syndrome (POTS), and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for the past 4.5 years. These conditions have left me with debilitating symptoms like crushing fatigue, brain fog, severe neurological impairments, chronic pain, insomnia, dizziness, fainting, and post-exertional malaise. The simplest tasks feel insurmountable, and every day is a fight for survival. That fight has become my full-time job, though it feels impossible—and that’s why I am here asking for help.

Before falling ill, I spent 15 years working internationally as a teacher, living in Singapore, Japan, and Canada. After completing a graduate degree in public policy, I moved to Atlanta, Georgia, in September 2019 to start a new chapter with my partner. In February 2020, during a trip to Disney’s Epcot in Orlando, I contracted what I now know was COVID-19. The initial illness was the worst I’ve ever experienced, but it was only the start of a relentless battle. Nearly five years later, this fight has left me a shadow of the person I once was—exhausted, yet still struggling to hold on.

Photo park in Florida when my life would never be the same

Me before last marathon I ran in 2017 in Toronto vs. me during my 4th visit in 4 months to ER in Atlanta alone in 2021

Overwhelmed & Abandoned: A Spiral Downward, Struggling to Survive

The past 4.75 years have been a devastating spiral of loss—my health, my career, my savings, my home, and my ability to support myself. In early 2021, I reached out for help, and the support I received meant the world to me. But now, years later, I find myself in a far worse place than I ever could have imagined.

As my symptoms multiplied and morphed into strange and frightening new forms, I see now, in hindsight, how closely they mirrored the abuse I endured from my partner. Looking back, I can see how each new symptom - like the emotional and physical abuse—was deeply interconnected, signaling the same warnings and patterns. What started as emotional and physical abuse shifted to neglect and complete withdrawal, and I cannot say for sure, but I don't know if I was consciously aware of how they all are one in the same.

By 2023, my partner—the person who had sponsored my move to the U.S.—had completely abandoned me. He cut off my medical insurance and deliberately used my vulnerable state against me in divorce proceedings. I couldn’t afford food, let alone a lawyer, and was too sick to advocate for myself in court. I spent months with no heat or hot water, selling off what little I had to afford meals, while being housebound and often bedridden, struggling to cope with my worsening symptoms.

Through all of this, I lived in constant terror, wondering when the day would come that my dog and I would be forcibly put out onto the street. That day eventually came - and it was pretty traumatic - despite knowing it was imminent. It is only in hindsight that I truly grasp the depths of how unimaginable it all was. Everyday I was just fighting to hang on.

The day I was evicted by county marshals in Atlanta, August 2023.

Trying to Restabilize: Struggling to Get Disability Support

Trying to sort my belongings after being evicted.

GG & I stopping for a rest in South Carolina - ran out of gas literally and physically

After being evicted from my home in Atlanta, I finally was able to get some help from my neighbours and pack up my car and start the drive back to Canada to my mother and fathers. I drove for days, running out of gas and energy, but eventually I made it where I have been for the last year.

While these months have provided some temporary stability, they have also been some of the hardest yet, and I find myself in an even worse state than before. Before leaving the U.S., I had access to health insurance (thanks to the ACA) and a team of Long COVID doctors who helped me get my symptoms to a manageable baseline, despite my severe impairments. Unfortunately, I have not been able to transition my care here in Canada.

Adjusting to life back home has been incredibly difficult. I’ve had to repeatedly explain the illness I had become so accustomed to over the previous three years, as well as my limitations, to family members who struggled—and in many cases, still struggle—to understand. My parents, both on fixed incomes and used to living on their own, tried their best to support me, but their resources were limited. Tragically, shortly after my return, my mother became very ill and passed away in March of this year. Now, my father has had to adjust to life without her while taking on the role of my sole caregiver.

Despite finally being in a position to apply for disability benefits, the process has been nothing short of exhausting. After numerous appeals and mountains of paperwork, I have been denied any disability assistance. Meanwhile, my condition has worsened, and the unrelenting stress of having no income, defaulting on my debts, grieving the loss of my mother, and being unable to access the care I need has left me utterly overwhelmed and at my breaking point.

I know I’m a fighter, and I hold on to hope, but right now, I need a helping hand to get through this difficult time. I can’t do it alone anymore. Thank you for reading my story and for any support you can provide—it means more than I can express.

My mom - I miss her very much. RIP March 25, 2024

Fighting for Disability Support

As I mentioned, I have continued to face hurdles in receiving any sort of support due to my particular circumstances:

Canada Pension Plan Disability (CPP-D): Denied because I only contributed 3 years to CPP instead of the required 4, due to working abroad in Singapore before moving to the U.S. Japan has social security agreement with Canada as does the US but Singapore does not unfortunately.

Social Security Disability Insurance (SSDI): Denied because I contracted COVID before receiving work authorization in the U.S. Contributions from a spouse can’t be used unless the marriage lasted 10 years, which mine clearly did not. Also, one cannot claim SSI unless permanent resident for 5 years - due to COVID, my adjustment of status was delayed so I did not receive PR till December 2020. Also, like Canada, Singapore does not have a social security totalization agreement with the US.

• Ontario Disability Support Program (ODSP): Despite submitting all my U.S. and Canadian medical records, signed and supported by my Canadian doctors I was finally able to get in to see many many months later, I was denied ODSP as they claim I am not disabled:

Even after providing a letter from one of Canada’s top Long COVID clinicians after being admitted into the Post-COVID Rehabilitation Clinic at Toronto Western Hospital, my appeal was also rejected.

The next step is the Social Benefits Tribunal, which requires legal representation and could take up to a year to resolve. Additionally, ODSP benefits are only granted while physically present in the province. At this point, the costs of pursuing the appeal—both financial and emotional—actually outweigh the potential benefits I might receive, even if my case is ultimately adjudicated properly.

After months of struggling to navigate the process and apply for disability benefits, I’ve fallen through the cracks and now find myself drowning. The stress of it all is only worsening my condition. What I need most right now is support to help me get back to a stable place. Once I’m there, I know I’ll be able to figure out the next steps. But right now, I really need a helping hand.

What I Need Help With

This is what I urgently need help with:

Me laying down as usual with my little baby

Why I’m Asking for Help

Being forced to crowdfund for basic survival does not feel great. It’s incredibly difficult to do this—it strips away self-respect and leaves you feeling judged and exposed. What should be a private struggle has become a public plea for simply meeting basic needs, and it’s hard to do this without feeling stripped of my dignity.

I feel deeply let down. I’ve worked so hard throughout my life, believing in the systems and institutions that were supposed to provide a safety net. But it’s not just me—millions of Long COVID sufferers face the same uphill battle every single day. Over the last five years, I’ve endured so much, like so many of my fellow long haulers. But now, the stress of my current situation is worsening my condition, when all I want is the chance to focus on resting and healing.

If you can help me in anyway, I appreciate it. Even just sharing my story to help raise awareness is worth its weight in gold. Thank you from the bottom of my heart.

Robert