It’s hard to believe that it has only been 7.5 years since I got my rheumatoid arthritis diagnosis. It feels like I’ve been diagnosed forever! But it was only in 2010 that I had that fateful doctor’s appointment. Today I want to look back at that time and share with you 10 things that I wish I had known in July 2010.
As a reminder, no two RA patients are the same. What may be true for me may not be true for you.
Just received a rheumatoid arthritis diagnosis? This is what I wish I knew when I got mine.
1 – The first medication you try might not work. Or the second. It can take years to find a treatment that you respond to because you might not respond to TNF inhibitors. So don’t pin your hopes on the first treatment you try or the second or the fifth, but don’t give up. Your doctors will do their best to help you find a treatment that works.
2 – You can’t do everything that you used it. And that’s not the end of the world! There’s still a lot that you can do, and you’ll find new activities and people that will ensure that you still have a great life.
3 – Some of the things you’re eating might make it worse. Test all sorts of foods to find what you react to so you can reduce your pain. Plus, this will make you eat healthier overall.
4 – Every patient is different, which can be great and awful at the same time. Accept that what works for someone else might not work for you, but definitely crowd source medications and treatments with the amazing chronic illness community to get opinions because there are some people who will have had similar experiences to yours, if not exactly the same.What you should know about living with RA if you've just been diagnosed Click To Tweet
5 – It’s not a bad thing to talk about your arthritis regularly, and it’s not narcissistic, either. There are a lot of people who benefit from hearing what you have to say. Some of them will tell you immediately, some of them will tell you years later, and some you’ll only hear from through other people. And that’s not to mention that people who won’t tell you at all. But talking about it also helps you. It helps you to be able to speak truthfully about what you’re experiencing instead of holding it all in. It helps when you feel like you don’t have to hide the bad days in order for people to care about you.
6 – You will lose friends because they can’t accept that your life has to change or they can’t accept that your disease has nothing to do with them. You will lose friends because they can’t accept that some things they do make your life worse. And that’s fine – they’re not worth it. But there is an amazing chronic illness community (including arthritis patients) online, and their support makes things a lot easier to handle. You might lose some friends, but you will gain others.
7 – There will be guys who run away as soon as they hear that you have an autoimmune disease. And there will be some who think they can handle it but actually can’t. It sucks, but it happens and you will be okay. It’s a good way to weed out the guys who can’t handle important issues. But there will be some who can handle it.
8 – And there will also be friends who can completely handle it and who offer to help you in any way you need and who take you to the ER when you need to. Cherish them because they are awesome. They see you for who you are beyond your health, but they also don’t care if you talk about your health and don’t think that you’re being narcissistic if you do talk about it.
9 – You need to get established with disability services at school. Some professors will easily accommodate you, but others won’t. If you’re established with disability services and they give your professors a list of your accommodations, your professors are legally required to follow them. Some will fight it even then, but the disability services office can get involved. Having that office behind you will give you courage to stand up for yourself when it comes to getting the academic accommodations that you need.
10 – The most important thing is taking care of yourself in body and in spirit. Life can be really, really difficult with rheumatoid arthritis, physically and mentally. It can be hard to admit that you need help and it can be hard to ask for it and it can be hard to take time for yourself to take care of yourself mentally. So do what you can to take care of yourself and cut yourself some slack.
What do you wish you knew when you were diagnosed with your chronic illness?
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