Three influencers explain why they are outspoken about their rheumatoid arthritis (RA).
Diagnosed in 1986, I kept my RA to myself because no one understood. There weren’t any treatments to stop the progression, and my doctor told me I could end up in a wheelchair. I was scared, and I wasn’t sure myself what was going on, so why burden others? Maybe if I didn’t talk about it, it would just go away.
Keeping it to myself only made me feel more isolated. In 2011, I started using social media to find others with RA. It is there I found my voice. By talking about the reality of living with RA, I finally felt validated, and more importantly, I was giving others – especially the newly diagnosed – encouragement and hope. It took me a long time to realize that being open to others is vital to teaching them the reality and impact of RA. Today, I am a passionate patient advocate and want to educate everyone who’s willing to care and listen about RA.
I’m pretty open about having RA. My family and close friends definitely know that I have it. It usually comes up in conversation, and I don’t shy away from telling people. When I started a new job, I didn’t necessarily advertise it, but I discuss it with co-workers as needed. I feel that telling people about RA is very important. I continually try to educate people about the difference between RA and osteoarthritis. I also feel that it is important to be open about my condition so that other people who may be suffering know they are not alone.
I don’t know that I have ever intentionally hidden that I have RA. I think it is important for others to know that I struggle with a chronic illness, even though – and perhaps especially because – they might not be able to see the effects. Many social and emotional struggles that people with rheumatoid disease face stem from a lack of education among the general public. I feel a responsibility to help bring about a greater understanding of it, and that requires being open and honest about my own experiences. These conversations can generate awareness that rheumatoid disease is different from osteoarthritis, it can attack any part of the body and its painful and debilitating effects are often invisible. A more accurate public view of RA will foster better support for patients and underscore the need for research funding and better treatments.
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