Soniya Vadher

I know I’ve been quiet again and I do feel bad but the truth is sometimes my body and mind just need me to step back.

I feel especially guilty for not showing up for my fellow zebras for Rare Disease Day this year. The 28th of February may be the official day, but for me and for all of us zebras it’s every single day.

I have 100’s of unopened DM’s, WhatsApp messages, missed calls and emails since the beginning of this year. Honestly, I’ve had zero energy and I’m struggling more than I’ve let on.

Alongside my ultra-rare condition, I’ve been dealing with treatment issues (old and new), an undiagnosed condition, a “maybe it’s this?”, and a new diagnosis too. Yep… apparently I’m collecting chronic illnesses.

On top of that, I’ve been battling severe health anxiety and near-daily panic attacks. It’s exhausting… mentally, emotionally and physically. The uncertainty. Being stuck in medical limbo. Fighting to be heard. Fighting for the right treatment. Fighting my own mind when health anxiety and panic start to take over. Some days I genuinely don’t know what to do with it all.

I’ve kept myself to myself because I don’t want to be a bother, even though I know I have friends and family who care deeply. But as I’ve said before… this really is a solo journey and I keep reminding myself that no one is coming to save me.

So right now, I’m channeling my inner warrior ⚔️

Healing.
Surviving.
Regrouping.

To my fellow zebras… I see you, even when I’m quiet 🤍

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#rarediseaseadvocacy #rarediseaseawareness #chronicpainwarrior #chronicillnesslife #rarediseasewarrior