A letter to my newly diagnosed self


My intention was to write this as a part of RD Blog Week but life happens and I got slammed after writing half of it. But the prompt really spoke to me- advice I’d give to my newly diagnosed self- because I’m often asked to give advice to others but have never really thought about what I would’ve wanted to hear if I could pull a Back To The Future on myself.

So power up the Delorean and let’s see if I can send this letter back to 2005.

Dear 2005 Amanda,

First things first, stop googling. Seriously. Stop. You will learn nothing productive there, you will actually hear a lot of things that may or may not be true and certainly exaggerated. So step away from Google.

Second. That jerk rheumatologist? Drop him like a hot potato. You deserve to be treated with compassion; you should never feel belittled for asking questions.

Third. Find your people. You will not start feeling better, both physically and emotionally, until you understand how to advocate for yourself from other patients that 2019 Amanda waited 3 years to find. Find them. Force them to be your friend. Learn from them. They will help you get your bearings when it comes to making informed decisions about your care. Feeling like you have a voice and can provide that feedback to your doctor will make you feel SO MUCH BETTER across the board. Watch their examples closely because you will learn that your greatest fear doesn’t have to be true-that having RA doesn’t mean that you won’t have a beautiful life- and that YOU are STILL the one who gets to determine that.

Fourth, and perhaps the most surprising for you to read, this won’t be the worst thing that ever happens to you. Read that again, internalize it, make it your mantra. Even more surprising, this will actually end up being something that gives you opportunities, introduces you to lifelong friends and makes you a better human.

And finally, you need to give yourself more credit. You are stronger than you think. Don’t underestimate your ability to make these lemons into a vodka lemonade.

But please don’t take 3 years to realize all of that. It will feel like lost time.

You got this, girl.

2019 Amanda

4 responses »

  1. OMG Amanda I love “stop Googling”. How fun is it to remember me googling RA. That was 20 years ago. Googling was what you do when you doctor wont tell you the truth. Or what you think should be the truth.

    I am so happy you joined us this year. I have one more winner to get awarded then I will send a wrap up email. But with this blog we now have 55 filed blogs. I am delighted you joined us this year.

  2. Thank you, I needed this. I am newly diagnosed with RA and trying to figure it all out and adjust to this new way of living. I am a googling fool right now on all things RA – medications, diet, you name it. So I will slow that one down 🙂 Thank you for sharing your experiences through your writing – so very helpful.

    • Jill, please don’t hesitate to reach out if you have questions or need to vent! And perhaps I should edit the post- not all googling is bad but googling that makes you sad, stressed or anxious…that’s what I’d slow down on. I hope you’re starting to feel better.

  3. Thank you for sharing your experience and giving advice! My friend has been diagnosed with RA and I’m trying to learn as much as possible. Googling sometimes is very upsetting…

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