My Several Worlds - Stories of Disability, Illness & Belonging

06/01/2026

The Disability Gap: Taiwan, Canada, and the Myth of Access

The Disability Gap is the space between a patient's medical incapacity and bureaucratic recognition. It is where patients are told: “Apply, but don’t get your hopes up." It moves slowly while you are in crisis.

This is the waiting period where income stops, your health declines rapidly, and administrative proof becomes the primary task of someone already ill.

Modern healthcare systems focus on accessibility and inclusion. But this doesn't happen the way you think it does.

The Disability Gap is where financial collapse, mental exhaustion, and medical destabilization happen together.

It exists in more than one country. It disproportionately impacts chronically ill patients. It also demands more from us than we have to give.

Chronically yours,
Carrie

Read more
🔗
https://www.myseveralworlds.com/2026/03/01/the-disability-gap-when-is-a-person-disabled-enough-part-ii/

06/01/2026

Via The Fibromyalgia Pain Chronicles for

The month of June is PTSD Awareness Month and June 27th is PTSD Awareness Day.

Research indicates approximately 37% - 40% of individuals living with Fibromyalgia also live with PTSD.

Post-traumatic stress disorder (PTSD) is a mental health condition that can develop due to exposure to a traumatic event, such as s*xual assault, warfare, traffic collisions, child abuse, domestic violence, witnessing traumatic events, or threats on a person’s life.

Symptoms include:

▪️disturbing thoughts, feelings, or dreams related to the events
▪️mental or physical distress to trauma-related cues
▪️attempts to avoid trauma-related cues
▪️alterations in the way a person thinks and feels
▪️an increase in the fight-or-flight response.

These symptoms last for more than a month after the event. Young children are less likely to show distress but instead may express their memories through play. A person with PTSD is at a higher risk of su***de and/or intentional self-harm.

06/01/2026

June is . I'm sharing because I was diagnosed with two years ago in July 2023. I'm struggling to find someone in my area that understands APS with D2T axSpA. My inflammation has been so out of control in the past four years, it has made my blood clot. ~Carrie

Thrombassadorial Work: Erwin native Lisa Lane Williams promotes awareness about blood clots

"Our mission is very
simple," she said. "Educate people to the dangers of these silent killers that take more Americans annually than AIDS/HIV, breast cancer and motor
vehicle accidents combined."

Credit: Stop the Clot
National Blood Clot Alliance

06/01/2026

June is .

APS: It's in the Blood!

is an autoimmune disorder that can cause blood clots in arteries and veins.

With , your immune system sees normal proteins in your blood, which are called phospholipids, as foreign substances.

APS is a rare autoimmune blood disorder that affects 1 in 2,000 patients. Learn more about it on my FAQ page which cites up to date research, studies, and trusted APS organizations that serve this community:
🔗 https://www.myseveralworlds.com/antiphospholipid-syndrome-aps/

05/31/2026

My pain
My fatigue

Agreeing to flare together at the most inconvenient time possible.

Credit Unknown

05/31/2026

It's !

Each year, highlights patients stories and this year's interview is with my friend and fellow fibromyalgia advocate, Johanna Baynard for fibromyalgia awareness.

Advice from Johanna and a fibromyalgia tip for you!

"Don't be afraid to try anything! Try it all and find out what works for your fibromyalgia. You don't like gabapentin - don't take it. You can't handle exercise? Don't do it! There are endless options, so don't give up until you find what works for you."

Fibromyalgia advocates celebrate all year long. In May, we celebrate loudly in purple and talk as much as we can to bring awareness to this devastating and painful disease.

Please have a read through her interview and enjoy!
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https://www.myseveralworlds.com/2023/05/11/johanna-baynard-interview-for-fibromyalgia-awareness-month/

05/30/2026

I had my first Canadian rheumatologist appointment on Wednesday.

I was very lucky to have my former rheum in Taiwan. He was not only a great rheum, but also an excellent teacher who took my 17 years of lived experience into consideration with every appt. He genuinely cared and went to bat for me every time.

My new rheumatologist began discussing diagnostic reclassification very early in our first appointment. Thank goodness I asked my mom to come in with me because I came out of that appt thinking, 'WTF. Did that just happen?' (She confirmed it did.)

I was not expecting to have to explain why I bypassed a small town community rheum in favor of a uni hospital. (I have excellent reasons.)

I had hoped he would recognize my knowledge and experience plus all the hospital notes I have from six hospitals in Taiwan and really take it into consideration before opening up a 'reclassification' discussion within our first hour together.

He said he rarely sees patients with more than one autoimmune disease and then brought up ASAS and the overlap between different forms of inflammatory arthritis.

Did I challenge that statement? No. Because when you are a patient, maintaining the relationship often feels more important than winning the argument.

But these are the battles that patients face all the time.

✔️ It is the unpaid labor we put in to managing our own care.
✔️ It is the constant proving and retelling over and over again every time we have to meet a new healthcare provider.
✔️ It is meticulously documenting, tracking, and taking photo evidence as PROOF.

It's exhausting.

My records should speak for me. I should not have to discuss s*x differences with a new rheum. Nor should I have to explain why my diseases match patterns related to women and not men with a disease that has historically been thought of as a male disease (a myth) and why I don't have the fusing he thinks I should have. (Women have less fusing but we carry a higher disease burden with more peripheral joint involvement.)

Additionally, while biologics have not lessened my pain or fatigue much, they have helped to protect my bones over the last 10 years.

The conversation triggered memories of previous medical gaslighting and years of having my symptoms questioned.

What complicated my feelings after the appointment was seeing my inflammatory markers come back elevated despite being on a JAK inhibitor and sulfasalazine. 😂😭

Anyways, I won't see him now until December 1st and I am no closer to resolving the significant amount of swelling and edema in my limbs.

Patients do not 'casually' blow through blood thinners and biologics without reason, nor do rheums prescribe these meds without reason.

Rolling into a 14 day heart holter test next (my third in 12 months) after being triaged to Ottawa Hospital for my arrhythmia.

I brought copies of imaging, specialist reports, and hospital records from Taiwan. I had hoped some of those records would be reviewed before we entered a discussion about reclassification. I even had concrete images showing ruptured cysts from my last scan in my binder.

I understand that doctors in a new country need their own baselines, but I hope those new baselines can be built on top of 17 years of documented medical history rather than starting from scratch.

What surprised me most wasn't the discussion itself. It was realizing how much of my medical history I am still carrying alone. After 17 years, I thought I was finally at a point where I could put some of that burden down.

APT! 👇
"How much I explain to my doctor compared to how much he put in my chart."

05/30/2026

Art Therapy with Karen Fitch

Coping with / and Through
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https://www.myseveralworlds.com/2018/05/01/art-therapy-for-chronic-illness-interview-with-karen-fitch/

The purpose of this series is to express how we use art to express our feelings about being chronically ill. Art can be used in so many different ways. It allows us to show our pain, our emotions, it can be used as a daily visual journal of our day to day life; the possibilities are endless.

Today I'd like you to meet my friend and fellow AS and fibro warrior Karen Fitch from Morgan Hill, California. Learn how Karen uses many different forms of art to cope with her chronic life.

05/30/2026

In December 2022 I won my petition for coverage for my progressively disabling in December 2022. It is an unheard of victory in Taiwan for patients like me.

I am lucky to have this coverage as most AS patients are still waiting for it. On the other hand, it's tough knowing my diseases are bad enough to win this kind of coverage. I did not win the lottery with arthritis! I also don't know many arthritis patients like me.
I was spending NT$32,604 every month out of pocket for years. I can't believe I lived like this for so long. It took 4 years to win this battle and I lost my health completelely..I've been out of remission and have blown through 9 biologics in three years.

During these three years, I was denied disability coverage until all nine meds failed me. I won my second major petition for disability coverage in April 2025. It's bittersweet as nothing is helping me feel better.

The feeling of knowing that a board of medical professionals finally see how sick I am and how badly I need these medications is indescribable but I gave it a shot here. Read my story here
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https://www.myseveralworlds.com/2022/12/08/what-it-feels-like-to-win-health-coverage-in-taiwan/

05/29/2026

FIBROMYALGIA FLOWCHART:

You feel tired
You do less
Your body gets weaker
You try to do something...but...
You feel tired...

Credit: Tom Peters Support Fibromyalgia Awareness