A woman sits in a doctor's office waiting room, leaning against a wall with question marks above her

Things I Wish I Was Told When Getting Diagnosed with AS

Getting diagnosed with AS really young left me growing up not being fully aware of what it meant to live a life of autoimmunity. At that age, most of what I heard medically went in one ear and out the other. My mother dealt with all of the medical knowledge and, well, as I got older I never really asked much about my illness. All I knew was that it caused me pain and I was medicated for it. Nobody ever warned me that there was more to my diagnosis than just arthritis.

I wish someone told me how fragile my body would be

I knew that living with this would mean my immune system wouldn’t be as good as the average person, but nobody told me just how fragile my health could actually be.

I knew I could expect to pick up colds more easily, but not that I could be more prone to infections or more serious health concerns. I only learned over the last two years just how important it is to take care of my body as a whole and not just keep my AS in check.

I wish someone told me how it would impact my mental health

After experiencing many setbacks and additional health issues, which can come with living with an autoimmune condition, my mental health has most definitely taken a hit. I personally feel that when someone is diagnosed with a chronic condition, not only should they be set up with their specialist but a mental health expert as well.

It can be so traumatic and lonely, and most people who do have an autoimmunity struggle with depression and anxiety. We shouldn’t have to be left out on our own to cope. We should have resources given to us to help us through, especially after diagnosis.

I wish someone told me what it meant to live with one as a woman

Nobody tells you how living with an autoimmune disease can affect your body as a woman. Many women feel too embarrassed to speak openly about their vaginal health. When I first got prescribed Humira, I was getting yeast infections left and right. I felt so ashamed and embarrassed. It also made me feel gross and insecure.

It wasn’t until I made my Instagram account last year and found a community of incredible women who were openly discussing how they too have gotten chronic yeast infections. It made me feel so much better knowing, in the world of autoimmunity, that this wasn’t a topic people felt too embarrassed to speak about.

Which leads me to my final point.

Nobody told me that I would connect with so many others who feel the same

Through all of this hardship I’ve found not only friendship through the community, but also so many others who have gone through such similar situations. It makes me feel less alone in this journey. So despite my health circumstances being less than ideal, I have a whole community of people in my corner who are here to cheer me on. And I hope you know that I want to be that person for you, too.

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