Finding hope amid the life-changing challenges of vasculitis

Rob Nelson explores Peggy’s Cove in Nova Scotia, Canada, in fall 2021. (Photos courtesy of Rob Nelson)

This is Rob Nelson’s story:

Receiving a vasculitis diagnosis has a dramatic effect physically, emotionally, and socially on both those with the disease and their families. Like many conditions, vasculitis directly and indirectly puts a strain on household finances. Coping and finding positivity amid all the life changes can be a daunting challenge, but realizing there is hope helps us find our way to a new “not-so-normal.”

Rob Nelson and his wife, Juanita, pause for a photo on Christmas in 2023.

Living with daily physical challenges or restrictions is tough. It’s frustrating not to be able to do many of the things I was able to do before this diagnosis. On some days I can manage to do more; however, any good days are balanced by bad ones. Instead of doing all physical tasks on my own, I now depend on others to help where needed. I find it tough to sit on the sidelines and not be in the game.

Vasculitis can be a very isolating disease for both the patient and the caregiver. The absence of a working immune defense system has restricted me to very limited human interaction. Many days have been spent at home instead of out with others, as the risk of infection was all too great. No longer can life be spontaneously lived; every trip outside the house needs planning.

Nelson is deep in thought.

I think vasculitis takes a mental toll on the whole family. First, you and your caregiver have to deal with the diagnosis. Labeling it only seems to raise more questions. Try to explain to someone for the first time that you have granulomatosis with polyangiitis and anti-glomerular basement membrane (anti-GBM) disease. Did you just get a confused look? Did you feel like you were telling them about a made-up disease? Many sleepless nights are put to waste trying to plan around an unpredictable disease. The what-ifs and the future unknowns are impossible to solve. It seems for every win there are three losses.

Medical bills, loss of work salary, and expensive lifestyle changes have stretched family finances. Living on a renal and diabetic diet is confusing and costly. There is also a continuous list of new and changed prescriptions that take away from the household budget. What are we going to do without? Financial planning for the future is complicated and next to impossible.

All in all, even though this new not-so-normal life has many challenges, I still need to find some positivity to live the best life I can. I need to face the fact that this disease is here to stay. As the saying goes, “it is what it is.”

We all need to find hope and courage as we fight our battles. Become your own researcher, questioner, and educator. Become your own vasculitis warrior. The more you and your caregiver know about the disease, the better life will be. Find things you can do, rather than dwelling on what you can’t do.

In recognition of Vasculitis Awareness Month in May, the ANCA Vasculitis Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by vasculitis, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #ANCASpotlight, or read the full series.