Things Nobody Tells You About Having an Autoimmune Diagnosis

Things No One Tells You About Having an Autoimmune Diagnosis

Alright, folks, gather ’round – it’s autoimmune storytime with a twist of life’s lemons and lemonades.

Let’s kick off with the not-so-fun part: Getting an autoimmune diagnosis. Yeah, it’s probably not the plot twist you were hoping for in the epic novel of your life. But hey, plot twists keep things interesting, right?

Now, for the brighter side of things: If you’re reading this, congratulations! You’re in for a crazy wild ride: you’ve also just been inducted into a pretty exclusive club!

Delve into the extraordinary realm of living with an autoimmune diagnosis, where you are granted a backstage pass to observe the enthralling and inexplicable workings of your own body. 

Forget those sleep-inducing brochures from the doctor’s office! We’re here to spill the real tea about living with an autoimmune condition. Get ready for some candid confessions from our Thrivers, a few laughs (yes – because we all need them), and insights that your doctor might not have mentioned. Discover the things no one tells you about having an autoimmune diagnosis.

moira said it

The Learning Curve is Like a Roller Coaster

Navigating your autoimmune diagnosis is a wild ride, and the learning curve is more like a roller coaster at a theme park! So, buckle up for the twists and turns because, trust us, there will be ups, downs, and unexpected loops along the way.

One day, you’re a newbie just stepping onto the ride, and before you know it, you’re practically an expert, armed with enough knowledge to write a book—or at least a very, very long Facebook post.


Things Nobody Tells You - Allison R.


From unraveling medical jargon to figuring out how the weather plays into your symptoms, the learning journey is a non-stop adventure. It’s exhilarating, overwhelming, and everything in between. Get ready for the ride of a lifetime!

Insider’s Insight: Don’t be afraid to ask questions and seek support from your fellow roller coaster riders in our community space. We’re all on this wild ride together!


Mood Swing Symptoms

Speaking of unexpected twists, let’s talk about symptoms of our autoimmune diagnosis. They’re like a fickle friend who can’t decide what to wear to a party. 

One day, you feel like the world is your oyster – full of possibilities and adventures. The next day, you feel like you’re the oyster – tucked inside, watching the world go by. It’s like your body is the unpredictable game show host of ‘Guess What’s Next?’ But hey, who doesn’t love a bit of surprise in their life? It keeps things interesting, and let’s be honest, we’ve all become pretty adept at playing along!


Things Nobody Tells You - Desiree W.


Insider’s Insight: Keep a mood journal to track your mood swings and identify any patterns or triggers. This can help you better understand your body’s signals and make proactive choices to support your emotional well-being.


More Than Just Physical

Now, don’t be fooled into thinking that having an autoimmune diagnosis is only about physical symptoms. Autoimmunity is a ‘whole package deal’. It’s not just your body that’s on this wild ride – your emotions and social life are in the passenger seat.

Insider’s Insight: Practice self-care by taking time for yourself and basking in those moments that bring you joy and relaxation. Whether it’s a bubble bath, a good book, or a Netflix binge, prioritize self-care to recharge and rejuvenate emotionally and socially.


Things Nobody Tells You - Alexa F.


Finding Your Tribe 

There’s something magical about finding people who get you and your autoimmune diagnosis. Imagine a group where talking about your latest doctor visit or your newfound sensitivity to gluten is the norm. 

This tribe, your autoimmune crew, becomes an invaluable part of your journey. They’re the ones who nod understandingly when you say you’re tired and don’t mean the regular kind of tired.

Insider’s Insight: Share resources and hacks. Have a favorite autoimmune-friendly diet or a life-changing self-care hack? Don’t keep it to yourself! Share your knowledge and experiences with your tribe. Together, you can navigate this journey with a little more ease and a lot more support.

We, at BrightlyThrive, The Autoimmunity Community™,  are here to remind you that you’re not alone in this autoimmune adventure. So, lean on, laugh with, and let us be your source of strength and inspiration. Together, we’ll conquer the world, one autoimmune warrior at a time.


Master Negotiator

If you ever find yourself in a sticky situation, like negotiating peace treaties or dealing with insurance companies, you might want to call in the big guns – someone with an autoimmune diagnosis! We’ve become masters of negotiation, like the legal eagles of our own health. 

Insider’s Insight: Research, research, research! Become an expert in your condition and treatment options. Doctors won’t know what hit them when you start dropping medical terms like a pro.



The Invisible Illness Superpower

Ah, the mysterious world of the ‘Invisible Illness’! It’s like being a secret agent, but instead of saving the world, we’re saving ourselves from our own bodies. We may look like ordinary people on the outside, but on the inside, we’re fighting battles that no one else can see.


Things Nobody Tells You - Noelle C.


Insider’s Insight: Educate the masses. Spread awareness about autoimmune conditions and the challenges we face. It’s like being a secret agent on a mission to educate the world. Share your story, debunk myths, and let others know that they’re not alone in this invisible battle.


Your Body, The Opinionated Roommate

Having an autoimmune diagnosis means constantly tuning in to what your body is trying to tell you. It’s like having a roommate that’s extremely vocal about its likes and dislikes. Some days, you’re in perfect harmony, and on others, you’re negotiating whose turn it is to compromise. It’s a lifelong partnership where communication is key.


Things Nobody Tells You - Hanna Jade W.


Insider’s Insight: Listen to the cues. Your body has a language of its own, and it’s important to pay attention to the signals it sends. Whether it’s a subtle ache or a loud protest, tune in and decipher what your body is trying to tell you.

Embracing Your Inner Superhero

Dealing with all of this? You’re not just strong; you’re superhero strong. Battling an autoimmune disease requires a growth mindset, resilience, and a sense of humor. It’s about finding your own unique way to cope, thrive, and even wear that metaphorical cape (sparkles and all) despite your autoimmune diagnosis.


Things Nobody Tells You - Cassie C.


Find Your Home in The Autoimmunity Community™

The Autoimmunity Community™ brings together diverse emotions, experiences, and collective strength. Each unique journey is met with open arms and understanding hearts. Recognizing the uncertainties and unknowns we all have faced in the past, our community is committed to closing those gaps through knowledge, support, and empathy. 

Together, we transform shared challenges into a source of wisdom and resilience, creating a safe haven where every laugh, tear, and triumph is deeply understood and appreciated.

Find Your Home in the Autoimmunity Community

Our collective experience is our strength. We exchange tips, stories, and insights that only come from walking similar paths. This community is more than just a support group; it’s a sanctuary where integrative wellness and heartfelt connections illuminate our journeys, making each step more manageable and meaningful.

Know someone who’s walking a similar path but are still on their own? Be a friend and let them know about BrightlyThrive™ so we can support each other on this unique adventure to thrive!


Lmhc, G. D. P. (2022, March 30). How to Be a Better Health Advocate for Yourself. Verywell Health.


Chronic Illness and Mental Health: Recognizing and Treating Depression. (n.d.). National Institute of Mental Health (NIMH).


How Does Social Connectedness Affect Health? (2023, May 8). Centers for Disease Control and Prevention.


McDonough, K. (n.d.). Negotiating a Patient-centered Plan. Pressbooks.


Roche | Increasing disease awareness to improve access to healthcare. (n.d.).