My name is Elise and I have Rheumatoid Arthritis. I know, I know, that’s how AA meetings go. Couldn’t help myself. Point is, I have RA. I was diagnosed with a different form of arthritis at age 10. Incorrectly diagnosed. It took more than a few years but I finally got a correct diagnosis. For a long time I hid my illness. I was already the weird loner kid. I didn’t need “sick” added to my labels. Sadly, hiding it just earned me different labels – things like “hypochondriac” and “faker” and “baby.” The label of “sick” was much better than those so I came out of the closet so to speak. Since then I’ve become an advocate for RA and arthritis awareness. Because of that outspoken behavior I often get asked to talk to people who are newly diagnosed and give them advice, resources, etc. Here’s my handy dandy list of tips and such for the newly diagnosed.
Welcome. Welcome to the tribe of the invisible illness. Welcome to life with arthritis. It will be a rough journey. Brace yourself.
1. Embrace your new normal. Arthritis will change your world. The person you were before diagnosis is going to go away. You’ll miss that person but you need to let them go. Embrace this new you and your new world. Yes, there’s more pain and more limits. But there is so much more. Allow yourself to see the other things in this world that you previously missed. Arthritis makes you slow down. Take the time to look around. Reinvent yourself.
2. Get support. This is a rough, sometimes ugly road. Find others who are on the same road. Their support and advice will be invaluable. No one can understand arthritis until they have it.
3. Be prepared for healthy people to be accidentally hurtful. They’ll try to help. They’ll suggest silly diets, crazy supplements and other things. They’ll say the wrong things. Get good at saying thank you and then moving on. That’s why #2 is so important. You need folks in your world to share this with who’ve been there.
4. Listen to your body. Become very self aware. Your body will show you your new arthritis dictated limits. Some days you’ll feel normal. Some days you’ll feel like you’re falling apart. The more you learn to listen to your body and not crash past your limits the less extreme these ups and downs will be.
5. Listen to your doctor. He’s got a lot of knowledge to share and wants to help you.
6. Make your doctor listen to you. You have to be strong and tell him when meds aren’t helping or the side effects are terrible. He can’t just know. Be vocal.
7. Educate yourself. Understand your specific diagnosis. The more you know the better prepared you will be for the future.
8. Try alternative therapies, vitamins and diet changes. There’s more our there than just medications. For most a combo of physical therapy, exercise, supplements and diet adjustments are the trick. Some foods will make you feel worse. Some….better. Sometimes a supplement can eliminate the need for a medication. Try things. You’ll find something that works.
9. Don’t be afraid to take a break from your meds. Most people (myself included) routinely go off their meds (usually once every 5 years or so for myself). It’s good for your body to get all that out of your system. And it is helpful for your doctor. It’s like wiping the slate clean and starting over. It’s a great way to assess how your disease is really progressing.
10. Be strong. I can’t say it enough times. This is a rough road. It is ugly. There is exhaustion like you can’t imagine. Depression. Loneliness. Frustration. Anger. Sadness. Regret. Don’t let those ugly things swamp your boat. They’ll try to sink you. DON’T. GIVE. UP. You’re not alone. You’re part of a new tribe. And we love you.