Love in the Time of Vasculitis

Love is such a blurry concept. It can hurt or it can heal. It can be rewarding and fulfilling and beautiful — if we know what it is. And with an autoimmune disease, love takes on an entirely different meaning.

The idea of “being in love,” as most sensible adults know, is a fairy-tale notion. Perpetuated by Hollywood and its happily-ever-after storylines, it does nothing for either the giver or the receiver once the initial glow of feeling fades.

And of course, there’s many forms of love to consider. Besides romantic love, there’s also familial connections and the care of close friends, which can contribute just as much to our lives. Where the physical body is ailing, we need a boost in spirit — and any kind of caring support can provide that if it’s genuine.

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For vasculitis patients, love is more practical. Some patients are independent and mostly able to assess and handle their own health needs. But others, especially those of us who experience a severe onset, want someone who can take care of us (however that manifests for our particular situation).

Love can look like:

• Helping us keep track of our diet, meds, and doctor appointments.
• Providing an emotional safe space to listen and comfort when we get overwhelmed.
• Learning about our disease to better support our journey.
• Asking sincere questions about how we’re feeling or what we’re thinking.
• Offering to provide support when and where we need it.
• Stepping in to help without being asked.

Caregiving is no small task. For those whose love language is acts of service, it might come naturally to take care of a loved one with health difficulties. Others may be entering an unfamiliar world just as their partner does, but feel more removed from it and therefore confused as to what their role should be.

Love doesn’t need to take romantic form for us to benefit from it. The care of a deep friendship has the same benefits — especially when that relationship has already been cultivated for years prior to a diagnosis. Someone who knows our vulnerabilities will be less likely to get spooked at our personality quirks when we encounter the new slate of stress an illness brings. And there are scientifically proven benefits to experiencing laughter with a trusted pal.

Of course, love is reciprocal. In fact, it’s sometimes even better to give than to receive it! But it’s good to acknowledge the significant struggle of being a vasculitis patient who’s unable to show love in the ways we’re used to.

Maybe we don’t have the energy to attend a friend’s birthday party or our kids’ sporting events. Maybe our finances are stretched to the point where we can’t give Christmas gifts to the extent we would like. Or maybe we’re so exhausted we don’t have any energy left over at the end of the day to give our partners the attention they crave to be fulfilled.

Regardless of what we consider love to be, the fact is that we all require human connection. Social creatures that we are, our established wolf pack is a pivotal factor in how we handle illness and all its complications. Even when the physical body falls short, our minds and spirits can still thrive.

Take a moment to consider what love is to you. Has it changed since you’ve become sick? How do you show love to others? How do they show theirs to you? When is it that you feel most cared for as you live with your illness?

Surround yourself with quality people who truly care, and you’ll reap the benefits of healthy connection for years to come.

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.