I’ll be taking down the #Pride shirts at the end of the month. I’ll be making some new designs next year that I’ll put up in May so we can all have them for the entire month of June.

The millions of people suffering from #LongCOVID deserve empathy, compassion and resources to recover our lives in a meaningful way.

Disaster struck our family almost 5 years. We've been left on our own by society + the government to find our way through it. We didn't do something to deserve what happened.

Our lives matter.

Without support--financial, social, medical--people with #LongCOVID + other #chronicillness cannot recover in any meaningful way.

I’d love to hear any ways that you do your future self a favor especially if you’re chronically ill or helping to care for others. #chronicillness

When I was #pregnant with my kids we stocked up on a freezer full of meals by doubling recipes.

I always try to do my future self a favor when I can. It’s been everything from spending my 20s laying a foundation for my mental health by focusing on healing from #CPTSD to these days getting medication set up on days where I have a little bit more ability to do it.

We don't have to perform. All feelings are OK. You will not be left alone or left out. We will change what we need to to make sure that everyone is cared for and included.

#InclusionMatters

Here’s a reminder I just gave my son & @k3nd477.com has given me plenty of times:

These holidays are for us. We adapt them to fit our needs.

Long COVID doesn't pause for things you look forward to, want or need. My kids and I have been feeling particularly rough lately. Especially one of our sons. #longcovid

If someone shares this with you, it’s ok to feel the discomfort and awkwardness. Don't run from it. Lean in. That's the only way we learn how to hold space for one another. #DisabilitySky

When someone shares about their unseen #ChronicIllness or #Disability, it's okay to not have the perfect response. It's okay to not "fix" things. Just being there--listening, holding space--mean so much more than you think.

Was told the other day by someone who has seen firsthand how sick my kids & I are, that we'll just need to find new hobbies. Its not a lack of imagination. Its lack of ability thats keeping us from being able to do anything other than lay down. Its the reality of living w/ #LongCOVID #ChronicIllness

It's really important as a human to be able to sit with suffering--both your own and others. It's an essential basic human skill that most people haven't learned. #ChronicIllness

I'm very open about my kids and I having #LongCOVID. There are many times where people will make ablest assumptions and I will share our situation. The vast majority of people are VERY awkward.

For everyone out there whether living with #ChronicIllness or not. No matter how you choose to celebrate this holiday season, know this: your presence, just as it is, is enough. You're doing a great job just by being YOU.

Chronically ill people aren’t asking for miracles. We’re asking for a world that sees our reality.

It’s not just about the pain, fatigue, or struggle—it’s about how these challenges coexist with our love, empathy, and strength. #ChronicIllness

Happy birthday!

Our risk for infection would greatly go up, access to healthcare would go down because we cannot travel that frequently, our symptoms would be exacerbated, and we would have more crashes if we didn’t have access to telehealth. We need to be able to access care at home. @longcovidfam.bsky.social

Screenshot of article about telehealth.

Screenshot of article about telehealth.

Screenshot of article about telehealth.

Telehealth is at risk. Our family is almost entirely dependent on telehealth for our medical and mental health needs. Our family would lose access to weekly PT therapy and doctor appointments. #telehealth #chronicillness

Recently we just had the first person in 4.5 years of being sick with #LongCovid ask us if there was anything they could do to make an event inclusive for someone in our family. They asked if there was a way they could advocate for us.

I'm so grateful.

Longhaulers often struggle to get through the basics of eating and going to the bathroom in a day and yet they will listen, help and love with the very little energy they have. #ChronicIllness

People with #LongCOVID are among the most loving, kind, generous, empathetic, strong, compassionate, soulful and real people I've ever met. I'm regularly struck with awe and respect.

The emotional roller coaster of getting our hopes up for a treatment that has the potential to help relieve/eliminate symptoms and the crash that happens when it doesn’t work or makes us worse, then trying to figure out what the next move is part of the invisible toll of #ChronicIllness.

All of this while still taking care of my mental and physical health. It's really irritating that only now that my husband does some of these things, because I'm unable, they are acknowledged and praised by others.

Before I got sick I worked full time (ed. + raising our kids), laundry, ran 99% of errands, menu planned, grocery shopped, made 75% of meals, all snacks, dishes, planned/prepped outings including vacations, 100% of bdays and Xmas, cleaned the car/house, grew our food, coordinated babysitting, etc.

We're working toward moving. We need to be in a living situation that works better for our family.

I used to be the one to pack us up when we moved. Even with our last move, I had #LongCOVID and still did the vast majority of the packing. It's hard to figure out how to do it now.

For too long, society has devalued the lives of disabled and chronically ill people. This isn’t just a healthcare issue—it’s a human rights issue. Let’s work toward a world where everyone is seen and valued.

What does being seen look like for you?

#disabledSky #chronicillness

Fatigue is just one part of #LongCOVID. Imagine living every day feeling like you’re on the edge of consciousness, compounded by debilitating symptoms like cognitive impairment, heart issues, and chronic pain. This isn’t “just being tired.”

Society often ignores the experiences of the most vulnerable, especially those with #LongCovid or #chronicillness. Those devastated by the pandemic have been left voiceless while the least affected dominate the narrative.