To Everyone Who Pretends They're My Doctor....
Ever wanna roll your eyes at someone who clearly has no idea what your disease is about — but who feels the need to share their thoughts or ask strange questions anyway? Yeah, thought so.
These are the four more commonly asked questions I get about AxSpa.
I thought arthritis was only for old people? Aren’t you too young to get arthritis?
It’s funny, I used to think so, too. I have since learned that there are a few different kinds of arthritis. One kind of arthritis is the wear and tear that you get from aging. It can happen to anyone.
Another kind of arthritis is inflammatory, and it is autoimmune or immune-mediated. This means that your immune system attacks itself, and causes inflammation that causes pain. This pain is arthritic in nature. And that’s what I’m dealing with — in my spine, hips, pelvis, and my joints. The inflammation doesn't just affect your joints, though. It can affect my eyes, heart, and skin, too. And actually, lots of people with my disease are diagnosed at a young age. I know, it’s crazy!
I’m sure that some yoga and good eating will make all the difference for you.
I know it seems like doing all those good things can help, but unfortunately, my disease is incurable. A lot of us already do yoga regularly and eat super well, but the disease is still very much in action. That’s why a lot of us are on medication on top of having a healthy lifestyle.
It’s frustrating, but my reality is that this disease has a mind of its own. Sometimes you can be doing everything right and it will still flare-up. I think a lot of us with this disease have come to an acceptance point, where we understand that even though we do things that are good for us, we might still be sick. I would be happy to send you information if you need it.
Have you tried...
Thanks for your recommendation. My medical team and I talk about various things that can help manage my systemic inflammation. It is important to me to try evidence-based remedies and practices.
Or:
Thanks so much for caring and sharing this information! There are a lot of things that are helpful for my disease, but sadly this isn’t one of them. I am up to date on the science, and there’s just no evidence that this will work in the short or long term.
How can you be tired? You slept all night!
I’m not tired. I’m fatigued. Tired is different, and it comes from not sleeping enough or being very busy. Fatigue is more like feeling tired even though you’ve gotten a lot of sleep. I’m fatigued because my body creates inflammation inside of itself. Because it’s so inflamed, my immune system is always working overtime. This naturally depletes my energy. So sometimes I need more rest than other people.
What sorts of responses do you have for people? I know it can be uncomfortable but it's so important to speak up.
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