Serving Chronic Illness Realness Vs Masking What’s Really Happening
September is Suicide Prevention Awareness Month and I’m going there. Yup, I’m taking a deep dive into the world of chronic illness realness to let you know that things are never what they seem.
What I let others see about my illness compared to what is actually happening have always been two very different things.
As illustrated in my FB post above, in the first photo you likely see someone who ‘looks ok’ despite the fact that I’m holding a needle. (You can click on the image to see it fully if you wish.) This photo is an example of masking what’s really happening.
Chronic pain patients and chronically ill patients often feel the need to hide what is really going on in our lives. We do this for many reasons, which I’ll address below.
The other two photos were captured at the hospital and they show the reality of my life. They’re serving chronic illness realness!
We are all familiar with “Thalia and Melpomene” or “Sock and Buskin” from the theater. Thalia is the Muse of Comedy. Melpomene is the Muse of Tragedy.
These drama masks are not only present at the theater. They are universals symbol for the sum of human experience and the range of human emotion. That’s why I am using them today. I hope it helps to illustrate my point about chronic illness realness.
Chronically ill people do a lot of masking. We hide what we are really going through for several reasons:
😬 For one, it’s difficult to explain how sick I am.
😑 Another reason is that my sick face makes others VERY uncomfortable.
😔 And yet another reason is that I often say I’m fine because it’s the easiest way to answer when people ask me if I’m feeling better.
🤯 Yet another reason is that when I don’t get better or show improvement, people leave which is why I keep my inner circle very small and tight.
🎯 The only people that actually, truly understand are other patients. And we do our very best to show you the reality while putting a positive spin on things because we know our lives disrupt the happy, perfect lives we are all used to seeing on social media.
It’s like I lead several different lives. It’s a very strange feeling! I’m heading into the hospital again. I’m at my sickest now after traveling this summer.
✈️ Three months ago today, I left Taiwan with a tenuous grasp on ‘stability’. My inflammatory arthritis came out of remission in July 2021. In 2022, my arthritis was extremely active, aggressive, and disabling. I couldn’t bend my arms or legs and I blew through four biologics trying to get it under control. In October 2022 I started my current medication and it was helping me.
I was approaching stability in May 2023. I decided to fly home to Canada to see my parents for the first time in four years. The flights to and from Canada resulted in me developing blood clots and in July I received a new diagnosis called APS aka Antiphospholipid Syndrome.
Am I surprised that I have another autoimmune disease? Not really. It’s a well known fact that autoimmune diseases like to party together. When you meet other autoimmune patients, you’ll see that they have several kinds of autoimmune diseases and disorders. You can learn more here: Why do autoimmune diseases occur together?
“The pathogenesis of multiple autoimmune disorders is not known yet, perhaps environmental triggers and genetic susceptibility are involved. Abnormalities of both humoral and cell-mediated immunity have been described.”
I’ve included some further resources on reading below if you’d like to learn more about this phenomenon.
Anyways, I’m not stable now. It will be another long, hard claw out of another deep hole.
All I can do is hold on and hope with all my heart that my body can withstand the chaos and that those closest to me know that I am doing my best.
People like me try not to stop fighting but we are raising awareness for Suicide Awareness Prevention Month this month for a reason.
It’s because we keep losing chronic pain patients!
And I can’t tell you how many friends I’ve lost to suicide because of untreated pain. It hurts deeply to witness their pain and see how they are left to cope on their own. I hope that I can provide some comfort and understanding. This is why I’ve called this article Serving Chronic Illness Realness and why I’m talking about masking.
Because we never really know what someone else is going through just by looking at them. And we certainly have no idea what patients are going through. ‘Sick’ doesn’t have a look.
I believe that whatever a patient decides is up to them. Often many patients feel like the only control they have left in their lives is how they decide to exit this world. That decision remains with them. Listen to them. Try to understand. And don’t be too harsh when a patient decides that enough is enough.
And while this comment/observation might be hard to read, I would like to remind you that life and reality is harsh! But let me remind you that many of us are stronger than you’ll ever understand.
You’re not tough until you are forced to be tough and have no options left.
If it makes you uncomfortable to see it, then you can’t imagine living it. It doesn’t bother me if it makes you uncomfortable. Pain is uncomfortable. It’s part of life.
If this post alarms you, don’t fret. I’m not going anywhere, friends.
Autoimmune Disease: Why One Often Follows Another: “Many researchers suspect that genetic, infectious and psychological factors are involved. Results from a study found that in 10 autoimmune diseases with began in childhood, there were 22 gene signals shared by two or more of the diseases and 19 shared by at least three of the autoimmune diseases.” https://www.medichecks.com/blogs/news/autoimmune-disease-why-one-often-follows-another
DEPRESSION TIPS ♥️ [Credit Unknown]
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I’m a chronically ill and disabled Canadian writer, patient advocate, international businesswoman, artist, and lifelong geek at heart.I lived in Taiwan for 23 years before repatriating to Canada at the end of 2025. My Several Worlds began as a travel and expat blog, but over the years it has grown with me through chronic illness, disability awareness, advocacy, business ownership, systems change, and the messy business of rebuilding a life when your body and the world around you do not always cooperate.I’ve lived several lives in one body. I built a massive international recruiting business called Reach To Teach Recruiting, became a professional writer and patient advocate, and somehow ended up as a chronically ill systems nerd who gets wildly excited about websites, healthcare policy, research rabbit holes, cats, and whatever is blooming in my garden.I’ve also modeled in Canada, China, and Taiwan, including one very memorable Discover Taipei cover involving a pineapple, which I still consider peak expat achievement.I’m a bit of a jack of all trades and a self-professed autodidact. I love art, flower arranging, reading — which is an understatement if you’ve seen my Goodreads profile. I have a special place in my heart for science, technology, law, health and medicine, history, disability policy, and culture.Animal videos make me cry. I hate cooking. You can find me nerding out at home most of the time due to being mostly housebound. If I'm not engaged in one of the activities listed above, I'm probably building websites.Check my About page to learn why I’m taking you on this journey with me through My Several Worlds.
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