Living with lupus and fibromyalgia feels like carrying an invisible boulder everywhere I go. Some days it’s crushing me into the mattress. Other days it’s just heavy enough to make every movement ache. But here’s what no one warns you about – that constant pain doesn’t just hurt your body. It steals your patience, your joy, and sometimes even your personality.
I used to be fun. I used to love spontaneous tickle fights and bear hugs. Now? Just the thought of someone playfully poking me makes me tense up. “Can you grab me a water bottle?” might as well be “Can you climb Mount Everest?” when getting off the couch feels impossible. The worst part? Watching myself become this irritable, exhausted version of me – the “party pooper” who can’t handle normal human interaction anymore.
Why Pain Changes Everything
Our brains weren’t designed for non-stop pain signals. Research shows chronic pain:
- Shrinks gray matter in areas controlling emotions and decision-making
- Keeps your nervous system stuck in fight-or-flight mode
- Literally rewires how you process frustration and annoyance
That’s why:
- A simple request feels like a huge demand
- Playful touching makes you want to scream
- You alternate between rage and tears for no “good” reason
Taking Back Control (Without Pushing People Away)
1. The Pain-Emotion Check-In
When I feel myself getting irritated, I ask:
- Is this person actually being unreasonable?
- Or is my pain making everything feel harder?
Just naming it helps me respond instead of react.
2. Scripts That Save Relationships
Instead of snapping (which I still do sometimes), I try:
- “I love you, but my skin is extra sensitive today – can we do a gentle fist bump instead?”
- “I’m in a flare – would you mind grabbing that yourself this time?”
- “I need to rest now, but let’s plan something low-key for later.”
3. Creating a “Pain-Friendly” Environment
I’ve learned to:
- Keep water bottles and remotes within easy reach
- Use smart bulbs so I don’t have to get up for lights
- Have “safe” spots where people know not to touch me unexpectedly
4. Teaching My Loved Ones
I made a list of what helps:
- Soft blankets instead of hugs when I’m flaring
- Texting requests instead of shouting across the house
- Understanding when I need to bail on plans
5. Forgiving Myself
Some days I’m still short-tempered. Some days I cancel last-minute. But I’m learning:
- My worth isn’t measured by how “easy” I am to be around
- Real loved ones will adapt when they understand
- Rest isn’t laziness – it’s healing
The Light at the End of the Tunnel
It’s not about becoming my old self again. It’s about creating a new version of me who:
- Advocates for her needs without guilt
- Finds joy in pain-friendly ways
- Lets people love her – even on the hard days
What’s your best tip for managing the emotional side of chronic pain? Share below – your experience might help someone else feel less alone.
(P.S. If you’re reading this from bed , I see you. You’re doing better than you think.) 
