A note from Kazzy
I wrote this from my bed.
That's not a disclaimer. That's the point.
I am Amanda Kasmira Cryer. Most people know me as Kazzy.
I am an award-winning filmmaker. I've been featured in Forbes. I was commissioned by Harvard University. I have won 22+ film festival awards. I have over 500,000 followers across platforms. I speak for healthcare organizations, universities, and advocacy groups about invisible illness, resilience, and what it actually means to build something meaningful inside a body that doesn't cooperate.
I do most of this from my bed.
In 2017, my body collapsed. I was 42 years old, the healthiest I'd ever been — yoga seven days a week, vegan, meditating every morning — and then, without warning, everything stopped working. What followed was a wheelchair, a walker, four walls, 30+ hospitals, dozens of doctors who couldn't agree on anything, and a list of diagnoses that kept growing: Lyme Disease, an acoustic neuroma, POTS, C-PTSD, Gastroparesis, Post-Covid Syndrome, Chronic Fatigue Syndrome, Cerebral Vascular Disease, and more. It has been nine years. Full remission has never come. I am approximately 55% recovered. And I have never been more alive in my purpose.
I made this guide because when I was at my lowest — truly at the bottom — I needed two things. I needed someone who had actually lived this to tell me the truth. And I needed to know where to turn.
This is both.
It is not medical advice. It is not a cure. It is what I know — from nine years inside this, from every hard morning and every small victory and every moment I had to choose to keep going — and it is yours.
"Any day I don't feel like I'm dying is a pretty decent day. And on those days — I build. I show up. I choose joy as an act of defiance."
You are not invisible here. You are not alone in this. And you matter far more than you know.
Let's begin. ❤️
Seven things I wish someone had told me
The truths that took me years to learn.
These are not platitudes. They are not inspirational quotes designed to make you feel better for thirty seconds and then forgotten. These are the things I had to learn the hard way — some of them while lying in a hospital bed, some of them at 3am, some of them only after years of resisting them. I'm telling you now so maybe you don't have to wait as long as I did.
1
Your illness is real. Even when no one can see it.
You are not making it up. You are not exaggerating. You are not seeking attention. Invisible illness is real — as real as a broken bone, as real as a fever, as devastating as anything a scan can show. The fact that your suffering is not visible to the naked eye does not make it less true. It makes it harder. And it makes the gaslighting — from doctors, from family, sometimes from yourself — one of the cruelest parts of this whole experience. You are allowed to trust your own body. You lived in it before the illness, and you live in it now. That knowledge counts.
2
Stop building a life that starts after you heal.
I spent years waiting. Waiting to feel well enough to start the project, take the trip, reach out to the person, say yes to the thing. My doctor said remission might come in one to five years. It didn't. And while I was waiting, time kept moving. The life you want does not have to start on the other side of recovery. It can start from exactly where you are today — inside this body, on this day, with whatever energy you have right now. That pivot, from waiting to living, changed everything for me. It can change things for you too.
3
The bed is a valid office. The couch is a valid stage. Wherever you are is enough.
I won 22 film festival awards for a documentary I largely produced from my bed while managing a brain tumor and a body in revolt. I have created content watched by millions — from my bed. I have written things that kept people alive — from my bed. Where you create does not determine the value of what you create. The world has a very specific image of what productivity looks like, and it does not include lying down. That image is wrong. Your output is valid. Your effort is valid. You are valid — exactly as you are, from wherever you are.
4
Grief is part of this. Let yourself feel it.
You are allowed to grieve the life you had before. The career you put on hold. The relationships that couldn't survive this. The version of yourself that existed before pain became daily. Grief is not weakness. Grief is not self-pity. Grief is the appropriate response to real loss. Skipping it doesn't make it go away — it just sends it underground, where it will find other ways to surface. You are allowed to say: this is hard. This is not what I wanted. I am mourning what I lost. And you are allowed to say that and still keep going. Both things can be true at the same time.
5
You are not a burden. You are a person who needs care.
I asked my mom what the point was. I told her I felt like a burden to everyone around me. That broke something in me to say out loud — and I think it breaks something in most of us to even admit we've thought it. Needing help is not the same as being a burden. Children need help. Elders need help. Sick people need help. Humans need each other. That is not weakness — that is biology, that is community, that is the fundamental design of our species. You were built to receive care just as much as you were built to give it. Accepting that is not giving up. It is wisdom.
6
Joy is not naive. Joy is radical.
I dance on my couch on the days I can barely walk. I laugh louder now than I did before I got sick. I find miracles in doing laundry, in finishing a yoga session, in sitting on my balcony with the sun on my face. This is not me pretending the pain isn't there. This is me refusing to let the pain have the whole day. Joy does not mean everything is fine. It means that beauty and pain can exist in the same moment, and you get to choose which one you face. Choosing joy — especially on the days when it costs something — is one of the most courageous things a person can do. Let yourself do it.
7
Healing is not a solo gig.
None of us were designed to do this alone. The isolation that comes with chronic invisible illness — the loneliness of being sick in a way people can't see, the exhaustion of explaining yourself over and over, the grief of friendships that couldn't hold the weight of this — is one of the most damaging parts of the experience. Find your people. They exist. They are in the resource list below. They are in communities online, in support groups, in advocacy organizations, sometimes in the DMs of strangers who just posted something that sounded exactly like your life. You do not have to explain yourself to your people. They already understand. Go find them. ❤️
The resource list
Where to turn.
Curated with love.
This is not an exhaustive medical directory. It is the list I would hand a friend — organized by what you might need most, annotated so you know what you're clicking on before you get there. Start with the one that feels most urgent. You don't have to tackle it all at once.
A note before you dive in
Some of these resources are for crisis moments. Some are for the long haul. Some are communities, some are organizations, some are tools. You don't have to be in crisis to use any of them. You just have to be a person living with something hard. That's enough to qualify. You are already enough.
Crisis Text Line
Free, confidential, 24/7. Text HOME to 741741 from the US or Canada. Real humans. No judgment. Available even when you feel like you don't deserve help — especially then.
crisistextline.org
988 Suicide & Crisis Lifeline (US)
Call or text 988 from anywhere in the US. Free, confidential, 24/7. For any mental health crisis — not only suicidal thoughts. Grief, overwhelm, panic, despair. All of it counts.
988lifeline.org
To Write Love on Her Arms (TWLOHA)
A nonprofit dedicated to presenting hope for people struggling with depression, addiction, self-injury, and suicide. Their find-help tool connects you to local resources by zip code.
twloha.com/find-help
International Association for Suicide Prevention
Crisis center directory for countries outside the US. If you are reading this from anywhere else in the world — you are not alone either, and help exists where you are.
https://www.iasp.info/resources/Crisis_Centres/
The Mighty
A peer community platform with millions of stories from people living with chronic illness, mental health conditions, disability, and rare disease. Read, write, connect. One of the most genuinely human corners of the internet.
themighty.com
Inspire
Online health communities organized by condition. POTS, Lyme, MS, Fibromyalgia, ME/CFS, and hundreds more. Find people who speak your exact language.
inspire.com
POTS UK / Dysautonomia International
For anyone living with POTS or dysautonomia — an incredibly underdiagnosed and dismissed condition. Research, community, and physician directory.
dysautonomiainternational.org
Global Lyme Alliance
Research-based resources for Lyme Disease and tick-borne illness. Patient stories, physician finder, and advocacy information for those still fighting to be believed.
globallymealliance.org
Solve ME/CFS Initiative
For people living with ME/CFS (Chronic Fatigue Syndrome) and Post-Covid Syndrome. Research updates, patient registry, and community connection.
solvecfs.org
NAMI (National Alliance on Mental Illness)
Free helpline, peer support groups, and education for anyone affected by mental illness — including those whose mental health struggles are tied directly to their physical illness. Helpline: 1-800-950-6264.
nami.org
American Foundation for Suicide Prevention (AFSP)
Particularly important for this community: people living with chronic illness face a significantly higher risk of suicide. AFSP offers support, resources, and connection for those who are struggling or who have lost someone.
afsp.org
Psychology Today Therapist Finder
Find a therapist who specializes in chronic illness, health psychology, or somatic experience. Filter by insurance, location, and specialty. Telehealth options widely available.
psychologytoday.com/us/therapists
PTSD Alliance
For those living with C-PTSD or PTSD — including those whose trauma is rooted in medical experiences, which is more common than people know and rarely talked about.
ptsdalliance.org
Patient Advocate Foundation
Free case management services for people dealing with chronic, life-threatening, or debilitating illness. Help navigating insurance denials, medical debt, and workplace issues. Real humans who fight for you.
patientadvocate.org
National Patient Advocate Foundation
Policy-focused advocacy for patients' rights at the legislative level. Particularly important if you are navigating disability, insurance coverage battles, or workplace discrimination.
npaf.org
NORD (National Organization for Rare Disorders)
For anyone living with a rare or undiagnosed disease — including many conditions in the invisible illness world that don't yet have the research to back them up. Patient registries, clinical trial matches, and financial assistance programs.
rarediseases.org
HealthWell Foundation
Financial assistance for insurance premiums, deductibles, copays, and out-of-pocket costs for people with chronic or life-altering conditions. Check their disease fund list — it's extensive.
healthwellfoundation.org
RxAssist
Database of patient assistance programs from pharmaceutical companies. If you cannot afford your medication, start here. Many programs offer free or deeply discounted medications to qualifying patients.
rxassist.org
Social Security Disability (SSDI / SSI)
If your illness has prevented you from working, you may qualify for disability benefits. The process is long and often requires appeals — but it is worth pursuing. The SSA website has screening tools to help you assess eligibility.
ssa.gov/disability
NeedyMeds
Free information on programs that help people who cannot afford medications and healthcare costs. Includes prescription discount cards, patient assistance programs, and free/low-cost clinics.
needymeds.org
Mighty Well
Medical-wear and lifestyle brand created by and for chronically ill people. Port pads, PICC line covers, adaptive clothing. Practical and dignified — because you deserve both.
mightywell.com
Spoonie Sisters / The Spoon Theory Community
If you've never heard of Spoon Theory — look it up. It will change how you explain your energy to yourself and others. The spoonie community online is one of the most understanding spaces on the internet.
butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory
Cara Care
App for tracking digestive health, symptoms, food, and stress. Particularly useful for those navigating Gastroparesis, IBS, IBD, or any gut-related condition. Helps you identify patterns you'd never catch otherwise.
cara.care
Before you go
You belong here.
You always have.
I want you to know something before you close this guide and go back to the life you're managing — the appointments, the flares, the explanations, the good days and the hard ones.
You are not invisible to me. You never were.
I built a platform of over 500,000 people not because I had the most followers or the best algorithm strategy — but because I showed up and told the truth. About my body. About my fear. About the days I asked my mom what the point was. About the days I danced on my couch when I could barely walk. The truth is what people are hungry for. And the truth is: this is hard, and you are not alone in it, and you are still worthy of a full and meaningful life exactly as you are today.
I will keep showing up. Every day that my body gives me. And I hope you will too.
"I SEE YOU. We see you. We love you. ❤️ Don't ever give up."
If you want to stay connected — follow me on Instagram at @amandakazzycryer, connect on LinkedIn at /in/amandakazzycryer, find me on Substack at mykazzy.substack.com, or visit my website at amandacryer.com. I post from real life, always. No performance. Just me.
And if today is one of the hard days — please reach out to the Crisis Text Line. Text HOME to 741741. Or call or text 988. You deserve to still be here tomorrow.