You’ve landed in the right place. You’re not alone. Maybe you’ve just been diagnosed. Perhaps you live with someone who has it or your late-night Googling might have taken a sharp left turn into “rare diseases you didn’t ask for.”
This blog is for you — the curious, the confused, the newly diagnosed, or the long-time warrior just trying to make sense of it all.
What Even Is Sarcoidosis?
Sarcoidosis is often called a snowflake disease. It isn’t because it’s cute and sparkly (although, let’s be honest, some of us do have a glow about us). It is called that because no two cases are exactly alike. It’s rare, confusing, and frankly, a bit of a diva. One minute it’s hanging out in your lungs, the next moment, it’s partying on your joints like it’s 1999. Charming.
And while it’s absolutely not a joke, sometimes the only way to get through this mystery of a disease is to laugh. So yes, you’ll find real talk here. But you’ll also find humour. There is a bit of friendly sarcasm. You’ll read honest reflections on what it’s like to live with something that even some doctors have to Google.
So here is my definition of Sarcoidosis. Sarcoidosis is a condition where the immune system goes a little haywire. It starts forming tiny clumps of cells called granulomas in different parts of the body. These clumps can show up in one or more organs. If too many build up, they can start messing with how those organs work. Over time, if the inflammation doesn’t get under control, it can cause permanent scaring otherwise known as fibrosis. This disease hits the lungs most often (about 90% of the time), but it can affect pretty much any organ including the skin. Even though research is improving, it’s still tricky to diagnose, hard to treat, and there’s no cure yet.
Sarcoidosis doesn’t act the same for everyone. Some people go into remission and never have another issue. Others might go into remission and then deal with flare-ups down the line. For some it doesn’t always roar, instead simmering away like an ember just waiting.It’s a mixed bag.
I’ve found the uncertainty of what might happen next to be the worst part. One minute I feel okay, and the next I get slammed with fatigue like I’ve been hit by a bus. It’s so frustrating, especially when I’ve got plans or things I want to do. Not knowing how I’m going to feel from day to day really gets to me.
I also hate being unwell for work or showing any weakness. I try to keep up. If I’ve had a big week or I’ve been traveling with work, I end up completely exhausted. But from the outside, no one can tell. I’ve got makeup on, I look fine so people assume I am fine, why wouldn’t they? So I feel like a bit of a fraud, I worry about being judged, weak or worse people not believing I am unwell so I don’t say anything. I’ve lost count of how many times I’ve just carried on regardless, struggling in silence.
Who Am I?
I’m a 46-year-old British woman living with Pulmonary and Cardiac Sarcoidosis, diagnosed in 2021. I work full-time, I’m married, and I’m the proud mum of a twenty-something daughter who said to me back in January, ‘what you don’t change you choose!’ (thanks, I needed that).
I’m currently on Methotrexate and Hydroxychloroquine — a combo that sounds like a potion from a wizard’s cabinet, I’ll go into detail about meds, side effects, and all that fun stuff in another post, but just know: I’ve been through it. And I’m still here, In fact as I type this I am better than I have been in 3 years.
My past test results? Coming soon. Spoiler alert: they’re confusing. Because of course they are. This is Sarcoidosis we’re talking about — it never does anything by the book.
Why I’m Doing This
When I was first diagnosed, I did what many of us do. I turned to the internet. I hoped to find someone — anyone — with a story like mine. I didn’t need miracles. I just wanted real. Real people. Real experiences. Real talk.
Instead, I found a lot of medical jargon and nothing which shared how this thing might evolve. So, I decided to write the blog I wish I’d found back then.
Since my diagnosis, I’ve asked a lot of questions (some of them annoying, I’m sure), navigated both the NHS and Bupa, and learned more about my body and mind than I ever planned to. There have been dark moments — fear, frustration, and that gnawing question of, Is this my life now? But there have also been breakthroughs, good days, small victories and epiphanies which are all part of the roller coaster of life.
Where I Am Now
Right now, I’m doing better than I have in years. Whilst much of what you read on Sarcoidosis would have you believe one day spontaneous remission makes it all go away, I haven’t experienced that. There have been times that I’ve had to really push to get the care I needed. I did my own research. I asked questions. I chased up appointments. Sometimes, I flat-out insisted there was more need for investigation. There’s been times when, if I hadn’t been persistent or paid for extra opinions, things could’ve got a lot worse. Heck I have even had to question medications being prescribed together after some unsavory symptoms!
I’ve had to come to terms with using medications I never wanted to be on, and there’s definitely been some trial and error along the way. But through it all, I’ve been stubborn about one thing—I’m not giving up. My overwhelming advice is to always check things yourself, don’t rely on the system alone. This disease often requires a multidisciplinary medical team. Sometimes, things blur between departments. Don’t get me wrong; my Sarcoidosis doctors have been great however, the complex nature of things requires individual involvement. I hope my blog will help you navigate this.
And somewhere in the middle of all this, I’ve realised that healing isn’t just about the physical stuff. It’s about mindset, grit, and finding a way to live with all the unknowns. It’s not just physical—it’s an emotional, mental, and even spiritual journey. Taking back control — in small, consistent ways — has been a turning point. And the biggest game-changer! Understanding that the mind plays a huge part in how we feel and what we’re capable of.
What You’ll Find Here
This blog isn’t just a medical diary (though yes, I will share my actual test results , medication stories, and the procedures I’ve been through). It’s also a place to find:
Books that made me think, laugh, or cry (sometimes all at once)
Quotes that have inspired me will be peppered throughout my blogs
Places that lifted my mood or offered peace
Wellness ideas that actually feel doable — no kale smoothies required
Products that bring me joy
Moments of honesty about when I’ve struggled, and what’s helped
Resources and reflections for navigating life with chronic illness
Basically, it’s a bit of everything — with heart, humour, and zero fluff.
The Quote That Keeps Me Going
There’s one line that’s stuck with me through all the ups and downs. You might recognise it from The Shawshank Redemption:
“Get busy living, or get busy dying.”
That’s the choice, isn’t it? Even when the odds feel stacked. Even when your energy’s low. Even when your medical chart reads like a Netflix drama. Every day, we get to choose. And I’m choosing to get busy living.
Final Thoughts (For Now)
I hope what I share here brings you something useful — whether it’s a laugh, a little clarity, or just the feeling that you’re not alone. I’m not a medical professional, so everything here comes from personal experience and personal research. But it’s real. And it’s honest.
So grab that cuppa (or that glass of wine — no judgment here), and settle in. We’ve got a lot to talk about.
CuriousBethLivingLife 