Share Your Experience

What you’ve lived through counts.

You have learned things about living with an auto immune and auto inflammatory arthritis ( Ai Arthritis ) disease that are not written down anywhere, such as how long it took before anyone named what was happening,
what you had to do to be believed,
what it took to get a treatment covered,
and what you wish someone had told you first.

Right now the only place that knowledge exists is with you.

Ai Arthritis is led by people living with auto immune and auto inflammatory arthritis ( Ai Arthritis ) diseases. Our work is peer-led, so what you tell us shapes the next resource, the next survey and the next class.

What you know is missing from the conversation

Decisions about Ai Arthritis diseases get made every day by people who do not live with one. What you have been through is often not yet in the conversation when those decisions get made, and you are the only person who can put it there.

Write it, or record it

There is no set form to follow. You write it or say it however it comes out.

  • Write it
  • Record a voice message
  • Record a video

There is room for how long a diagnosis took, what got dismissed, how treatment access and cost have gone, how appointments go, and what has actually helped. Answer the parts you want to and leave the rest. You also choose whether your name goes with what you share or whether it stays anonymous.

Share your experience with us privately

It takes as long as you want to give it.

Open the form on its own page if it will not load here.

Or email it to info@aiarthritis.org if a form is not the easiest way for you. Write it however you want, or attach a voice memo or a video. We will write back with the two questions the form asks at the end, so you still choose how your name is used and what we may do with it.

What sharing an experience involves

Sharing an experience with Ai Arthritis takes as long as you want to give it. You can answer the parts you want to and leave the rest, and you choose whether your name goes with it or whether it stays anonymous.

You can share an experience in writing, as a voice message or as a video. The recorder is built in, so nothing has to be uploaded.

What happens to what you share

Four steps, and every one of them runs patient to patient.

  1. You share what you have been through

    In writing, or as a voice or video recording. You answer the parts you want to.

  2. We find what is missing

    What you describe gets read alongside what others have sent, to show what is not yet in the conversation.

  3. Patients build what closes the gap

    People living with these diseases are invited back to make the resource, the survey or the class that answers it.

  4. It goes back out, patient to patient

    What gets built is taught by the people who live it, to the people who need it.

The loop continues

Then it starts again. The person diagnosed next year reads what you wrote this year, and what they send back becomes the thing after that.

Questions people ask before they start

How do I share my experience with Ai Arthritis ?

Use the form on this page. You can write your experience, record a voice message or record a video, and you can answer the parts you want to and leave the rest.

How long does it take?

As long as you want to give it. Some people answer a few questions, others go through all of them, and you can stop wherever you want.

Do I have to answer every question?

No. Answer the parts you want to and leave the rest. A partly answered experience is still worth having.

Can I stay anonymous?

Yes. You choose at the end whether your name goes with what you share or whether it stays anonymous.

Can I record a video or a voice message instead of writing?

Yes. The recorder is built into the form, so nothing has to be recorded elsewhere and uploaded.

What happens to what I share?

We listen to what people tell us and use it to find what is still missing from the conversation. Then we bring patients in to build what closes it, and what gets built goes back out, patient to patient. What you tell us goes into the resources we build with patients, so the next person still looking for answers has more to go on.

Do I need a diagnosis to share an experience?

No. The years before a diagnosis are part of what is missing from the conversation, so an experience from someone still looking for answers is worth as much as one from someone treated for years.

Posting about it publicly is a different thing

Sharing an experience with us is private. Posting is public and it belongs to you. If you want to do both, post using # Ai Arthritis # Auto immune # Auto inflammatory #Arthritis and tag @ifaiarthritis, so we can amplify it.