Josie
Featuring Josie from
Melbourne Victoria, Australia
How long have you been living with lupus?
27 years
Describe the version of you that exists on the days no one can see what you’re carrying.
What does s/he look like, feel like, carry?
You might think about the thoughts you keep to yourself, what your body is experiencing, or what it takes just to get through the day.
For me it’s the fatigue on most days! No one sees this as I’ve just learnt to deal with it.
What is something you’ve had to grieve because of lupus that you’ve never actually said out loud?
This could be anything—lost time, energy, relationships, your sense of normalcy, or parts of yourself you’re still redefining
I’ve lost a part of me, being me! The old version of me was so much more healthy and energetic.
What do you wish people (your family, your coworkers, your doctors) around you understood about your invisible? It could be about your limits, your needs, or what support really looks like for you
I absolutely wish people understood me and my health more! Looking at me, you’d never know the burden I carry because my symptoms are invisible.
Tell me about a moment when you showed up fully—and no one knew what it cost you.
Think of a specific moment—at work, at home, or with loved ones—where you pushed through
more than people realized.
I show up everyday for my twin daughters! I push through joint pain and fatigue and no one would ever
know!
Have you ever felt dismissed, misunderstood, or unseen because of lupus? What did that moment teach you? Share as much or as little detail as you feel comfortable.
Absolutely, especially when I flare up! I’ve learnt to understand my triggers and learnt that if I need to test, it’s important to do so
What has lupus forced you to learn about yourself? This could be about your strength, your limits, your voice, or how you care for yourself.
It’s taught me to listen to my body more and to sometimes take a step back where necessary! It’s ok to say no at times!
What boundary have you had to draw that felt revolutionary? And how did it change your
life?
Boundaries can be big or small—resting, saying no, asking for help, or choosing yourself.
Having 10 year old twin girls can be demanding and having a village of mums who help me out, when I ask for help has been a life saver!
What are you unapologetically doing now to nourish yourself—body, spirit, mind—that medicine doesn’t prescribe? This might include rest, nature, spiritual practices, therapy, movement, or anything that helps you feel whole.
I have joined a gym to keep me moving, however I don’t always make it due to exhaustion
What does your power look like—not in spite of lupus, but because of who you’ve had to become? Power can be quiet—honoring your needs, advocating for yourself, or simply continuing.
My power looks like me advocating for myself more, not feeling like I need to explain myself to anyone and just continuing to strive for happiness.
What are you most proud of in yourself right now?
It doesn’t have to be big—sometimes the smallest wins mean the most.
I’m most proud of me staying true to myself at all times.
Where do you find your strength on the days when things feel heavy? This could be people, practices, mindset, or something within you.
I find strength through my beautiful twin girls.
What does living a full life look like for you now—on your terms, not anyone else’s? This could show up in how you rest, set boundaries, move through your day, define success, or choose what truly matters to you. There’s no one way to answer this—just share what feels true for you.
Living a full day for me looks like resting when I need it most and choosing to remain positive no matter what.
What is something you’ve chosen to still pursue, experience, or hold onto—even with lupus? This could be a dream, a lifestyle, a relationship, or simply a way of being.
I continue to work 4 days a week and choose to be positive and focused on a daily.
What does support look like for you—and how can your community show up better for you? This could include friends, family, workplaces, or healthcare providers.
I have a village of support through my husband, family and friends, to which I’m super grateful for.
If you could say one thing to the person who just got their diagnosis—the one sitting alone in the car after the appointment—what would you say? Speak to that person however you needed someone to speak to you.
Listen to your body, rest and take a step back if need be.
What is something you want to say to the person who has supported you through your lupus journey—but may not say often enough? This could be gratitude, acknowledgment, or something you’ve been holding in.
Thank you for your unconditional support and love, especially on days where I can’t get up!