What Vasculitis Awareness Month Means to a Patient

May is a gorgeous time of the year in the Midwest. Finally, the cold weather is past and we can enjoy the beauty of spring. Everyone’s spirits are high as we near the end of the school year, making plans for summer travel and other warm-weather entertainment.

The celebratory feeling lends itself well to Vasculitis Awareness Month (VAM), which we observe for the entirety of May. For some patients, it’s a time to push for better education, in hopes they will see a better quality of life. For others (like me), it’s a means to acknowledge the difficulties we’ve faced and be joyful for our current good health — especially if we’re fortunate enough to achieve remission.

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Being an advocate

Each year, patients and their families put on hundreds of VAM events. While this is a fantastic way to mark the observance, it’s not always possible for those with a more serious condition to match the energy of such activities.

Fortunately, there are multiple ways to recognize VAM. It’s possible for everyone to get involved, no matter your health situation. Some ideas:

• Post daily or weekly on social media about your personal illness journey. What do you face on a regular basis? What do you wish people around you knew about vasculitis? What are some positive words you can use to encourage others?
• Organize an event in your neighborhood, church, or community to raise donations for the Vasculitis Foundation or another organization of your choice.
• Talk one-on-one with family or friends and explain to them why VAM means so much to you.
• Leave pamphlets or other literature around your school, church, or medical office for others so they can learn the details of your disease.

Speaking up

I’m a big fan of casual conversation leading organically into the subject of my illness. It makes it very personal, and usually the other person will ask more questions as they realize what a huge impact it’s had on my life. In fact, several people in my social circles are aware of many autoimmune disorders because they learned about them through me.

There is one legitimate concern: How do I strike the right balance of being forthright without shocking my conversational partner? Over the years, I’ve learned how to start with the basics (inflammation of the blood vessels, how symptoms manifest, what sort of medications I need to take) and then go into more detail if they’re interested. Often, even the smallest bit of information will be enough to trigger recognition when the name comes up again.

Positive strides

Besides validation and comfort, there are broader reasons to spread awareness. Back in 2004 when I first became sick, it was a struggle to find doctors who knew what to do with the alarming symptoms. It took five months and various teams of physicians across disciplines to settle on an autoimmune disorder, not to mention those who knew how to test for ANCA levels specifically.

Quite simply, the more there are people who know about vasculitis, the easier it will be to diagnose. Spreading the word elevates the illness from a fancy bit of terminology on the medical drama “House” to a household name. When a patient presents with symptoms, the medical staff can recognize the issue sooner, then come up with a confident plan of treatment to avoid complications.

The best awareness there is for living with vasculitis is the everyday life of patients. Whether we struggle with a high-risk situation, have been in remission for decades, or are somewhere in between, the people around us learn about vasculitis by watching us maneuver through it.

I’ll never hide the complications of my disease, as being authentic helps others learn more about it. But along with the challenges, I also want to present optimism. In time, I hope to see the stigma of helplessness and disability fade away, leaving support and empathetic understanding in its place.

Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.