Beth Usher

I keep coming back to this strange truth that chronic illness has taught me. That grief and joy don’t take turns. They don’t wait for their moment. They exist at the same time, often in the same day, sometimes even in the same hour. There are days where I’m grieving everything my body can’t do anymore… and still catching myself in small moments of glimmers I didn’t expect. It used to confuse me. I thought it meant I wasn’t grieving “properly” or that I wasn’t allowed to feel joy if things were still this hard and if I was feeling joy, then surely I wasn't as sick as everyone had thought? But I don’t think it works like that anymore. I think both things are just… true. . #grief #chronicillnessawareness #invisibleillnessawareness #lifeisforliving #mentalhealthmatters

I think people see someone living with chronic illness for a long time and assume that eventually it just becomes easier. Like if you’ve learned how to manage it, or still function in some way, then you must be okay now. But learning to live with something is not the same as being okay with it. A person can adapt to pain, exhaustion, limitations, symptoms, appointments, medications, and all the invisible things that come with chronic illness and still find it incredibly hard. We adapt because we have to. Life keeps moving, and somehow we’re expected to keep moving with it. I think people get so used to watching chronically ill people cope that they forget we’re coping with something in the first place. Just because something has become our normal doesn’t mean it stopped being difficult. . #disability #chronicillness #autoimmune #grief #spoonie

Arthritis Awarness month 💜 I was 12 when I was diagnosed with Juvenile Idiopathic Arthritis and secondary Raynaud’s. At that age, you don’t expect your life to revolve around pain, fatigue, hospital visits, and learning medical words you can barely pronounce. You expect it to be school, friends, and growing up. But for me, it became something different. One of the hardest parts wasn’t just the symptoms, it was not always being believed. Trying to explain something invisible is exhausting, especially when you’re a child. There were moments of loneliness I still remember. Moments where I felt like I was watching life from the outside. Now, years later, I understand how important it is that young people are listened to. That symptoms are taken seriously. That we stop assuming illness has an age. Because invisible illness is still real,even when no one else can see it✨ . #arthritisawarenessmonth #rheumatoidarthritis #jia #arthritis #hiddendisability

Let me explain… Chronically ill people are already dealing with all the normal pressures and responsibilities that come with adult life work, bills, relationships, chores, appointments, expectations, responsibilities. But we’re doing it while battling bodies that are constantly working against us. We live with pain, exhaustion, flare-ups, medication side effects, symptoms people can’t see, and the mental load of managing our health every single day. We carry the fear of losing jobs because we need accommodations. We juggle endless appointments, treatments, tests, hospital stays, and recovery periods. Some days we can push through. Some days we’re completely bed bound. Yet somehow we’re still expected to keep up with friendships, maintain relationships, stay productive, reply to messages, clean the house, exercise, socialise so we “don’t isolate ourselves” all without burning out and putting ourselves into a flare. People see the moments we rest and call it laziness. What they don’t see is that chronically ill people are often working harder than everyone else just to maintain a life that healthy people take for granted. We are not lazy. We are exhausted from surviving. . #chronicillnessawareness #autoimmunediseases #advocacymatters #invisibleillnessawareness

Dynamic disabilities shouldn’t be ignored, especially in hospital settings. I’ve been biting my tongue at these backhanded comments for 21 years. I got sick at 12, and since then it’s been constant: “you’re too young”, “you look fine”, “you can manage.” So I learned to stay quiet. To not ask for help. Because apparently that was easier than having to prove I was unwell. But I was wrong. I should’ve been calling this out the whole time. People need to be educated on fluctuating conditions, because ability is not fixed, and illness doesn’t have a “look”. The fact I’m STILL hearing this at 32… in a hospital… after surgery… is actually wild. Do better. Seriously. Stop assuming. Stop dismissing and stop being so comfortable in ignorance. . #dynamicdisability #invisibledisability #hiddendisability #chronicallyill #dismissal

What no one really talks about when you become chronically ill is how small and lonely your world suddenly becomes. Not all at once, but slowly, in ways you don’t even realise at first. Going out starts to take more energy than you have. Plans feel harder to commit to because you don’t know how you’ll feel. You cancel, or you stay home just in case, and over time that just becomes your normal. You stop showing up the way you used to, and even when people care, life keeps moving around you. Invitations come less, conversations change and somehow your world gets quieter without anyone really noticing. And it’s not just being alone. It’s missing out, it’s feeling like you’re on the outside of your own life, watching it happen without you. That’s the kind of loneliness chronic illness can bring and it’s something people don’t talk about enough. . #loneliness #chronicillness #autoimmunediseases #invisibleillness #spoonielife

Living with a chronic illness or invisible disability can be exhausting in ways people don’t always see or understand. So this is your reminder for May: you deserve support, rest, understanding and joy too. I hope this month brings you more good days than hard ones, people who truly get it, and moments where you feel seen and validated in your experience. If things feel heavy right now, be gentle with yourself. Your body is carrying a lot. Save this for the days you need the reminder, and share it with someone who might need it too🫶🏻✨ . #may #hiddendisability #affirmations #chronicallyill #spoonie

When I was younger, I genuinely believed that pushing through my illness and pretending it wasn’t there made me stronger… like I was somehow proving everyone wrong. I couldn’t have been more wrong. I wish I had learned sooner that rest isn’t something to feel guilty for. That slowing down doesn’t mean you’re weak, it means you’re listening. Because in trying to “push through,” I actually did more harm to my body than good. If you’re on a similar journey with chronic illness, please don’t feel like you have to prove anything to anyone. You don’t need to push through. Acceptance isn’t giving up… it’s where healing begins and I wish I had learned that sooner 🫶🏻✨ . #chronicillnessawareness #invisibleillnessawarness #butyoudontlooksick

I know I sound like a broken record sometimes, and maybe this page has become a bit of a diary for me, but this is something I keep coming back to. Hospital beds, chronic illness, invisible illness… they have a way of clarifying friendships. If you’re not there for someone on their worst days, you’re not really their friend and if you only like someone when they’re the easier version of themselves, that’s not real friendship either. I’ve spent far too long focusing on the people who never show up for me, especially when I spend so much of my life in hospital, instead of appreciating the ones who do. The ones who bring me snacks, make me laugh when I feel awful, sit with me, help me, check in, or just stay. Those people? They matter. They’ll always have a seat at my table. But respectfully… if I’ve been ill for 21 years, in and out of hospital and you’ve never once shown up in any way, that tells me everything I need to know 🤷🏼‍♀️ . #friendships #chronicillness #hospitalstay #friendshipbreakup #hiddendisability

I have so much anger and grief towards my body right now. A body that’s meant to keep me safe… but lately feels like it’s doing the opposite. No matter how hard I try, no matter how much I listen, rest and do everything “right”, I still ended up here. I’m still in hospital, still fighting sepsis and I didn’t want to wait until I had something positive or inspiring to say before sharing this. Because this part matters too. The anger, the grief, the frustration of living in a body that doesn’t do what you need it to. I know I won’t be the only one who feels like this. If you’re carrying that anger towards your body, if you’re grieving what it can’t do or what it’s put you through… you’re not alone in that. I think it’s okay to feel both. To be angry at your body for what it’s put you through and still be grateful that it’s keeping you here. Those feelings can exist at the same time. Maybe that’s what this looks like sometimes. Not loving your body… but not giving up on it either. . #bodygrief #autoimmune #chronicillness #invisibleillness

not Jesus, just your chronically ill friend briefly out of a flare suddenly you have energy, you’re making plans, replying to messages, thinking “okay maybe things are turning around” then your body humbles you real quick...back to your regularly scheduled symptoms . #spooniehumour #chronicillness #invisibleillness #hiddendisability

I don’t look sick… but I am. Living with an invisible illness means constantly being seen… but not always understood. 
It’s hearing “you look fine” while fighting battles no one else can see. It’s pushing through exhaustion that sleep doesn’t fix. It’s showing up anyway, even when it takes everything out of you. Behind the smiles, the “I’m okay,” and the moments that look easy… there’s strength, resilience, and a body working overtime just to get through the day. Invisible illness doesn’t have a look.
It doesn’t have an age. 
and it doesn’t make someone any less valid. If this feels like your story, you’re not alone 🫶🏻✨ . #invisibleillness #chronicillnessawareness #spoonie #disabilityawareness