Chronic Illness and Disability: How Sick Do You Need To Be For Help?

There is one sentence from my marriage that I keep coming back to.

“We aren’t there yet.”

It was May 2022.

I was out of remission, we had just moved to our third apartment in 15 months, and my body was falling apart again from chronic illness and disability. My joints were so badly affected that I could not bend my arms or legs. I was using a wheelchair. The business I had spent years helping to build was struggling, and I was terrified about how much longer I could continue working at the level required of me.

At the same time, circumstances in our household were changing. He had started a teaching position at a school that I found for him and he was doing well. His child-support obligations were ending.

I remember sitting with him on our patio and telling him directly that I was struggling and that I needed help. There was no hinting or expecting him to read my mind.

I told my husband I was overwhelmed, I couldn’t continue the way I had been going, and I needed financial help. Having blown through my savings and retirement money on treatments, I genuinely believed that this was the point when we would rebalance things as a married couple.

Even then, I wasn’t asking for an immediate change. I remember thinking that I could wait a few months and let him enjoy having some breathing room after his child-support obligations ended before we rebalanced our finances.

Instead, he told me, “I don’t think we’re at that point yet.”

I asked about using our joint savings because I was struggling so badly. After all, we had used it for a new fridge and a dishwasher. Was I not just as important as appliances?

Again, the answer was that we weren’t there yet. In fact, his reply was something like, you want to use our savings for this?

This… Being my health and well-being by the way.

And yes, I do. It would buy me some much needed rest time so I could possibly recover a bit. In 2025, I prayed to myself every day that I could get better and stop living in hell. I was sick, struggling, and feeling suicidal from March 2025 onwards. I got a PSVT diagnosis in July 2025. Then I had bilateral Baker’s Cysts in my legs rupture in August 2025.

I had never asked for anything from our savings in 17 years.

Nor had I asked for help with my treatments.

I recall him helping me a few times when loading doses exceeded my monthly paycheck, but the help was often accompanied by conflict about the cost. He had child support to pay and I remember having a discussion with him and saying my meds were three times his child support.

The convo then shifted to comparing child support and my treatments. I know how much he was paying for child support because I spent the first part of our marriage helping him with it. It came out of our joint business earnings for many years. I do not begrudge my stepson that money, but I did have to tell my husband that we needed to stop doing that.

More importantly, I didn’t even have access to our joint savings account. Any time I asked, I got a vague reply.

Something changed for me during that conversation. I didn’t leave obviously. And I never stopped loving him. I certainly didn’t stop hoping. But that is when I remember starting to feel really uneasy and I made a note of it in my journal.

Looking back, I think that was when I began losing faith that help was actually coming. Because if this wasn’t the point when the weight shifted, I had no idea what that point would be.

For the next several years, I kept finding out.

How Disabled Is Disabled Enough?

Readers, you know I’ve written about this topic before. Those articles were directed at the Taiwanese and Canadian medical systems. I never realized it also applied to my marriage!

When Is A Person Disabled Enough was written on December 27, 2023.

The Disability Gap: When Is A Person Disabled Enough Part II was written on March 1, 2026.

Now here I am writing about it again inside my own marriage. This is an article I never dreamed of writing until last week when I realized WTF.

The terrible irony is that this became one of the central questions of my life: When is a person disabled enough to need help?

I wrote about it and advocated for myself for appropriate medical care. It required documenting my declining mobility, pain, medication reactions, hospital visits and the enormous amount of energy required simply to keep myself functioning.

My husband saw that process.

He knew when I started using a wheelchair in 2009 and then started using it regularly in 2017 when I purchased my first wheelchair. The hospital appointments, medications and treatments were things he knew about for 17 years.

He knew I was giving myself injections and he saw the severe skin reactions I experienced while trying different treatments. The cost of my medical care was 100% clear to him as he watched me hand over NT$30,000+ in cash every month for treatments. (Check out the photo above of me handing that stack of cash to the hospital.)

He knew I was continuing to work through it and he read my writing about disability and the struggle to obtain appropriate care.

Inside my marriage, I continued trying to explain that I could not sustain what I was doing. I said this repeatedly and directly in as many ways as I could think of.

Eventually, medical professionals and disability systems in two countries recognized the severity and permanence of my disability. But the person who had lived beside me for more than two decades had already witnessed something those systems never could.

He fucking knew what my life looked like before I became this sick, and what it took for me to keep functioning afterward.

I sometimes see conversations about struggling marriages where someone asks, “But did you tell your partner you needed help? Did you ask directly and explain how overwhelmed you were?“

Those questions hit differently now because I know I did. I asked repeatedly, over and over again. I told my husband I was drowning with work and that I couldn’t continue financially the way I had been going. Prioritizing help and rest were at the top of my list every time I approached him for help.

The problem wasn’t that I hadn’t communicated the problem because I had. One response to the financial strain was to reduce and stretch out my paycheck so that the company’s available money would last longer. Obviously this didn’t address what I was actually saying. My problem wasn’t simply that the money needed to last longer.

It was that I could no longer physically sustain the amount of work required of me.

I needed less weight to carry and instead, I had to keep carrying it. I was home sick in bed while keeping the company that he was no longer participating in from going under. This is one of the hardest parts for me to look at now. The story wasn’t simply, I got sick and someone else had to carry everything for me.

That isn’t what happened.

I Was Living With Chronic Illness And Disability And Still Carrying It

I got sick and was still carrying business operations. While I was sick I was still contributing to ‘my half of the household expenses’. I was sick and still paying enormous medical expenses while navigating frightening medication reactions and cardiac problems. All of this was happening while I continued to work on the business that had been dumped on me. I single-handedly kept Reach To Teach going throughout all of this and often worked on Reach To Teach from the hospital.

I was sick and explicitly saying, repeatedly, “I need help, I can’t keep going like this. I need to rest.”

Nothing changed in response to those requests. So I kept going because I felt I had no other choice.

In 2022, I had an unusually successful year professionally. At that time, I had no medication coverage. Between NT$32,000 and NT$36,000 of my NT$70,000 monthly paycheck went towards medications that were not helping.

Meanwhile, money from my earnings was being used to repay his mother for a loan. I had not agreed to that repayment arrangement, and I have retained the records relating to it. At the same time, I was paying tens of thousands of NT dollars each month for my own medications.

I was generating substantial revenue for my business while becoming progressively less capable of sustaining the workload required to generate it.

That distinction matters enormously to me now because I wasn’t refusing to contribute. I was desperately trying to continue contributing after my body could no longer safely keep pace with what was being asked of it.

I Even Asked Him to Ask Someone Else

By October 2025, I was running out of ways to ask. And by then, I wasn’t even saying that my husband needed to solve everything himself. I had arranged at home care and qualified for 32 hours each month. My disability transport was organized by me in October 2025.

I begged him to ask our families for help. One night I asked him directly if we could ask his mother or my parents for help. He wanted to know why. I replied that it was because we were struggling and that we should let people who loved us know what was happening.

His response was, “Nobody needs to know about our marriage except us.”

I was gobsmacked. How could he continue denying my cries for help when I had just received a heart diagnosis and had ruptured Baker’s Cysts in both legs? I was using disability transport to get to my hospital alone. If I didn’t book the transport in time, I had to get an Uber. Then he’d charge me for $5 medical Ubers to and from my appointments. I cannot tell you how much money I spent on taxis and Ubers over 17 years. I can tell you that it was A LOT.

By then, I could no longer identify any other way to communicate the seriousness of what I was saying.

And only weeks later, I reached the point I had been desperately trying not to reach. Once more I told him I could not keep living like this. By then, I only had $300 a month to live on each month and I was fucking drowning.

Then I got hit with this gem on November 11th, 2025.

“I Won’t Stop Living My Life Because You’re Sick”

I never wanted another human being to stop living because I became ill. I had spent years doing pretty much anything I could to avoid feeling like a burden.

I was shocked to hear that sentence because, from where I was sitting, his life had not stopped.

When I could no longer participate in the life we had originally built around travel, business, living abroad and adventure, I didn’t stop creating a life. Instead, I adapted, wrote; I created art and made collages. Then I published a coloring book and a journal. I worked on websites and advocated and built projects around what my body could still do.

I found things I could do at home in bed and tried to build different versions of a meaningful life. All I wanted was someone to share my life with me. When you are married, you expect that the person you choose to spend your life with will actually be there for you.

So Who Was Carrying the Care?

I’ve also spent a great deal of time reconsidering the idea of caregiver burnout and I want to be fair about this.

My husband did help me in practical ways at various times. He drove me to or picked me up from some medical appointments. He took me to the emergency room on a number of occasions. There were things he did that made life easier. Those things happened, but so did everything else.

Who researched my medical care? Me.

Who managed my medications? Me.

Who administered my injections? Me.

Who organized appointments and followed up when things went wrong? Me.

Who attended many appointments, scans, procedures and hospital visits alone? Me.

Who kept working? Me.

Who kept generating income? Me.

Who paid enormous medical expenses? Me.

Who kept documenting symptoms and trying to persuade doctors that something was seriously wrong? Me.

Who eventually arranged disability transportation when getting to medical care had become too difficult? Me.

And who repeatedly said she was exhausted and couldn’t keep doing all of this? Me.

Being affected by someone’s chronic illness and disability is not the same thing as carrying the ongoing work of managing that illness for them.

Living with a chronically ill spouse can absolutely be difficult. Plans change. Life becomes smaller. The future you expected may disappear. Both people can experience grief, frustration and exhaustion.

But when I look at the actual labour involved in keeping me medically, financially and professionally functioning, I see something very different from the story I once told myself. The person who was profoundly burned out and still kept going because she had no other choice was me.

While my world became smaller, my husband’s continued to include extensive travel.

There were long periods when I was home alone managing complex illness. I don’t have to reconstruct that from memory because I wrote about it all the time. My old Facebook posts are difficult for me to read now because I can see myself documenting exactly what was happening without fully understanding what I was documenting. I wrote about being alone, being overwhelmed, being extremely sick, and running out of fresh food and struggling to get groceries.

Friends came over to visit, help clean and they brought me food because I couldn’t manage it. My friend Jackie attended hospital appointments with me. I was telling the truth about my life in real time, but I didn’t understand the larger pattern.

“You Were Well Enough to Leave”

Then came one of the last things my husband ever said to me. During our last call on January 3, 2026, he said, “Well, you were well enough to leave, weren’t you?”

The same old patterns were still there. Two days after he was expressing remorse, he was again telling me when and how he expected me to communicate with him. And I thought FUCK THAT.

That sentence has stayed with me because it covers one of the most damaging misunderstandings about disability. If you can do something, you must therefore be capable of doing it.

But capacity doesn’t work that way, especially not with complex chronic illness and disability.

A disabled person who accomplishes something doesn’t tell you what it cost to do it. No one sees the sacrifices we make to make things happen. They don’t know how long the recovery is or whether the effort was sustainable. It certainly doesn’t tell you that the person could simply repeat things again and again without consequences.

But he knew this. He lived with it since 2009.

So here is my reminder.

Sometimes disabled people do extraordinary things because there is no other alternative. Sometimes we borrow heavily from tomorrow’s spoons. At times necessity overrides every smoke signal our bodies are giving us.

And sometimes a disabled woman crosses an ocean because she understands that the cycle isn’t changing. Staying is no longer an option.

Being able to leave did not mean I had been well enough all along.

It simply meant I found enough capacity to leave. It was a narrow window of time after cysts had ruptured in my legs and I was recovered ‘enough’ to leave.

Four Hours for One Box Representing My Life

I know what leaving cost me. When I finally started packing, the first box took approximately four hours. I was overwhelmed by the impossible question of what pieces of a 23-year life I should send ahead when I didn’t know what my future looked like.

Eventually I created a system for packing on December 13, 2025. I packed per month. January through March boxes required warm clothes, socks and underwear, art supplies, one book, one precious thing, and a tiny angel with every box.

Then I did the same for April through December. This was not like packing for China in February 2003. I had a suitcase and a backpack then. Nor was it like packing for Taiwan when I arrived after three months of backpacking around Southeast Asia.

This was packing and wondering how to get fragments of my life that I might need if I couldn’t come back. I was still planning on coming back, by the way.

But the clock was ticking and the person I moved to Taiwan with was nowhere to be found.

Please think about that. Your spouse is leaving to see her sick father after literally saying she cannot keep going like this. She is returning to Canada to try and meet pension requirements because her partner refuses to plan financially with her. I told my husband that I had been depressed, suicidal and profoundly alone that year.

I remember him staring at the wall while I tried to get through to him. At one point, in desperation, I threw a glass of water in his face and yelled, Listen to what I am saying to you. How many times do I have to FUCKING TELL YOU THAT I’M DROWNING?

What followed, as I experienced it, was more silence and periods when I was left without food in the house that I could readily manage. By then, I felt that he had already left the marriage emotionally, even though I had not yet left Taiwan.

We Were Already There

Looking back, the answer to that conversation in May 2022 seems painfully obvious. When I sat on that patio in 2022 unable to properly bend my arms and legs and told my husband that I could not keep going, we were there.

I bought my first wheelchair in 2017 and we were there.

When medications consumed an enormous portion of my income, guess what? We were there!

I started fighting for disability care, by the way, and WE WERE THERE.

When I wrote publicly about the question of being disabled enough to deserve help, HOLY SMOKES. WE WERE THERE.

When I was managing hospital appointments alone, we were there. Friends were helping me because I couldn’t manage ordinary tasks, and we were there.

When I was publicly writing that I was sick, overwhelmed and alone, WE WERE FUCKING THERE. When I asked my husband for financial help, WE WERE MOST DEFINITELY THERE. When I eventually begged him to ask our parents for help, we were there.

For years, I kept waiting for the moment when “not yet” would finally become “now.”

Meanwhile, I kept providing for myself. I kept managing my medical care and I continued advocating. Work was all consuming but I kept adapting. I also saved the measly NT$12,000 I had left from my paychecks after I was done paying for our life and my medical expenses. And eventually I used the capacity and resources I had left to leave.

Then I was told, “Well, you were well enough to leave, weren’t you?”

Yes, motherfucker. I was well enough to leave but I wasn’t well. There is a difference! And after all these years, I finally understand the answer to the question I kept asking.

We weren’t waiting to get there. I was already there and I had been there all along.