Self-Advocacy and Attitude: How Anna Survives (and Thrives) in Her Life with Wegener’s Granulomatosis (Pt. 3)

Before you read, make sure you check out Parts 1 and 2 of our interview. In Part 1, we discussed what Wegener’s granulomatosis (GPA) is, Anna’s diagnostic journey, and her first episode of symptoms. Next, in Part 2, we talked about completing an Ironman triathlon and Anna’s second bout of symptoms.

Finding Love (and an Advocate)

It took a few years for Anna to physically and emotionally recover from her experience and from her chemotherapy, during which time she was not dating. When she finally started dating again, she met her now-husband on February 12th, 2019. By their third date, she had told him about her diagnosis. She laughs as she recounts:

I said, ‘Look, I have Wegener’s granulomatosis and it can be tough to deal with. I went through chemo twice, but I’m managing well now.’ And then we kind of moved on from the topic. The next date, he told me he looked it up and said, ‘That’s kind of a big deal.’ I told him it was, but I took Rituxan for it and it works for now. And the date after that, he told me he looked up Rituxan and said, ‘That’s kind of a big deal.’ And I explained that yes, it was, but I know how to handle it.

Even though her husband hadn’t previously had any experience with this condition, Anna explains that he has been her best advocate (besides herself) and that he understands how the disease has impacted her better than anyone else has. And when she has needed to lean on him, he’s always been there. A few years ago, Anna got neutropenic fever and ended up in the emergency room. She explains that, initially, the attending physician had greatly exaggerated his experience with her condition:

My gum tissue was dissolving around one tooth and he said that saw it all of the time with Wegener’s patients, which I knew was wrong. If he had seen more than five Wegener’s patients, that would be a lot, and seeing even one with this particular issue would have been crazy. Even later, when I asked my rheumatologist, she said that she had never seen this happen in any of the many Wegener’s patients she treated. The emergency room doctor said this is a trauma hospital, insinuating that I did not belong there for this minor issue, and that all I needed was a prednisone prescription and he would send me home.

However, Anna and her husband knew that something was wrong. So they insisted that the doctor needed to listen to Anna – which ended up being the right decision. As Anna shares:

It turns out I had no white blood cells, which is life-threatening. I spent almost a week in the hospital. My husband was able to speak intelligently to the doctors that week and tell my story when I was too out of it to explain.

For those who may not yet have an advocate with them in these situations, Anna stresses that they need to stand up for themselves and not be afraid to say what they need.

The Importance of Self-Advocacy

When Anna recounts her journey, there is one part that sticks out to her the most: the periods of times in which she was “just existing.” It’s through this that she developed such a keen sense of self-advocacy. She shares:

Just existing is no way to live. Advocating for yourself is the only way to get through this. That’s why I spend so much time on forums – because some people are just existing, and I want to help if I can. When you get diagnosed with something like this, it’s just overwhelming.

But you have to play the hand that you were dealt and figure out how to best deal with this hard-to-treat disease. Find your people. Learn to find resources. Be organized when you go to the doctor; put your questions in your calendar invite or in notes so you don’t forget. Educate yourself on your condition. Understand what your doctor can and can’t do. You have to understand what you’re dealing with and the system you’re working within. And if your doctor says something that you don’t feel is right or helpful, stick up for yourself and find another doctor if needed.”

Outside of those pieces of advice, Anna explains that her attitude towards her condition also shapes the way she manages it. She shares that Wegener’s is both the best and worst thing that has happened to her. While she knows how bad it can get, she also thinks that her experience living with her condition has made her not sweat the small stuff as much. She shares:

Your attitude towards it is very impactful. There are some folks that dwell in the disease, and live as if they are just sick and can’t get out of it. But the mind is strong and there are times you can fake it until you make it – to a degree. There’s times when you’re just sick. But there’s times when you have some wiggle room.

Embodying this perspective, and sharing it on social media, has also helped Anna make some of her closest connections within the rare disease community – such as Marta. In 2012, Anna met Marta on an online forum about their condition. At the time, Marta had just finished chemo and Anna was about to restart chemo; Marta gave Anna a refresher, and Anna gave Marta insight on what effects might happen in the long-term. Anna says:

Marta and I are soul sisters. We’re bonded in a way that can’t be explained. Since we’ve met, we’ve had the same perspective: we have this disease, we’re going to manage it, and we’re not giving it even a minute more than it deserves.

In fact, their connection and friendship has been so impactful that Anna has even tentatively named one of the chapters of her potential book “Marta.”

The Desire to Write a Book

Currently, Anna explains, there is only one book that really talks about someone’s experience living with Wegener’s. Although Anna feels that sharing these stories is important, she came away from the book feeling a bit unsettled; the woman’s experience had not really reflected Anna’s own journey.

So Anna began to wonder what would happen if she wrote her own book. After all, if her favorite true crime podcasters could write a book, why couldn’t she? (As a note, Anna and I both share a love for top-tier true crime podcasts). She explains that her desire to write a book is an aspirational thing and she’s not quite sure how to do it – although she has already made great strides, such as creating an outline and starting to figure out names and topics for her chapters.

So far, she has started writing about her diagnostic journey all the way through Springfield, and plans to expand into her experience with treatment and beyond. And in the interim – Anna’s going to move on and make her life the best that it possibly can be.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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