7 things I wish people understood about ANCA vasculitis

Living with a chronic illness like EGPA involves many complexities

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by Suzanne DePaolis |

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I’ve had eosinophilic granulomatosis with polyangiitis (EGPA), a type of ANCA vasculitis, for 17 years. After my diagnosis, I had to change my life and reinvent myself. At the same time, I was grieving my life before EGPA and educating myself about my new normal.

In the years since, I’ve tried to help family and friends understand my limitations and the complexities of having a rare, chronic disease. But even after these explanations, there are several things I wish people better understood about living with ANCA vasculitis. Following are seven of them:

1. Dealing with vasculitis isn’t easy.

Keeping myself healthy is hard work. I have a well-choreographed dance of doctor appointments, medical tests, and infusions. I must always listen to what my body tells me and act upon any symptoms that could be indicative of a relapse or infection. Missing an appointment could be the difference between staying healthy and having a flare.

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2. Vasculitis is a chronic illness.

There currently is no cure for ANCA vasculitis. Many people ring a bell after they complete cancer treatment, but I’ll never be able to do that because my treatments are ongoing. A friend once asked me if I was “done” with my illness, and I realized that they didn’t understand the definition of chronic. ANCA vasculitis is more like a marathon than a sprint, though my race will never end.

3. I look good on the outside.

I spend a lot of my limited energy making sure I look good and dress well. I carefully pick out clothes to hide my prednisone-induced weight gain. By putting my hair up in a bun, I can hide the fact that I haven’t washed it for days.

However, people can’t see the internal damage from years of taking potent medicines to keep my disease under control while my inflamed blood vessels make me short of breath and shut down my kidneys. My illness is all on the inside, invisible to most.

4. I have good and bad days.

I usually don’t know how my body will feel on any given day. Sometimes I’ll lie in bed in the morning wondering how my illness might affect me in the next few hours. On good days, I might accomplish many tasks and move effortlessly through my activities. Others won’t see me on the bad days, because I like to cocoon inside my house when I’m feeling awful.

5. Socializing is exhausting, and sometimes I have to cancel plans.

Being social is exhausting for me. A simple cocktail party can make me feel like I’ve run a marathon, because even if I’m sitting down, I must stay alert and be friendly. Smiling for hours is more than my tired body can handle.

Although I don’t want to cancel plans with friends and family, sometimes my body is too tired and needs rest. This is the only way that I can rejuvenate myself and be ready to spend time with everyone on another day.

However, if I cancel plans, I feel guilty about letting people down. If I cancel plans with you, please understand that it’s not you, it’s me. Also, please show empathy by not expecting me to keep up with your busy social calendar.

6. I may need help to work a 9-to-5 job.

Although I would prefer to hold down a traditional 9-to-5 position, I also realize that my ANCA vasculitis prevents me from being a dependable employee. Juggling multiple medications, tests, infusions, and appointments is a full-time job.

I also need many days off to attend medical appointments. This doesn’t mean I’m lazy. I’ve learned to prioritize my health to survive.

7. Please don’t give up on me.

Here’s what I can offer you: I can bring peace and calm into your life and teach you to avoid stressors. If you like taking life at a slower pace, getting to know me is worth the time. And if you like sitting on the couch, ordering takeout, and watching a movie in your pajamas, I’m your girl.

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.


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