Good Support Equals Quality Over Quantity

New beginnings in life tend to bring a sense of hope and excitement. A new relationship can have a couple swooning over each other for the first few months, then hating each other the next. You can find a new favorite flavor of ice cream at the grocery store and eat it for months, until one day, you suddenly become sick of it. We become inexplicably tired of something that was once intriguing. Interestingly, I feel the same can happen to those battling a chronic illness.

I was diagnosed with scleroderma seven years ago and it has turned my life inside out. At the beginning of my diagnosis, I was a healthy, capable young woman. (I’m still in awe that the rheumatologist diagnosed me on the spot.) I could still take care of myself without help, so it was easier to hide what was happening to me. The oblivion of what was to come weighed heavy on my shoulders as well as on those around me. It was easy to reassure each other that, “I wouldn’t get that sick.”

I rallied friends and family to participate in my first local 5K scleroderma walk in 2012, and about 50 people showed up for “Team Jess!” The support was overwhelming. To show their continuous support, people would often send me pictures of them wearing the color teal, which is the color of the ribbon. Words of encouragement were flowing into my inbox at a constant rate. But as time went on, I began to get sicker, and the novelty of the disease became a harsh reality.

Every year, fewer people show up for the walks. The fresh initiative to support me has dwindled down a few notches. I’m sicker than I was in the beginning stages, so I require more help and support now than ever. The idea that I was changing for the worse seemed to fend people off. Friends I thought I had a lot in common with began to diminish as new challenges and changes were introduced, and that’s OK. A few family members who were once by my side for everything now only see me in small doses. It hurts my feelings when I reach out to people for help and get their silence in return. But I’m slowly learning that not all soldiers are cut out for war, and they don’t know this until they are on the scleroderma battlefield.

The first walk compared with the latest walk. (Photos by Jessica Massengale)

On the other hand, my fresh zeal to fight has weathered down a bit as well. Year after year of medications, doctor visits, and uncomfortable testing has changed my demeanor. Dealing with chronic illness, patients exhibit a rainbow of emotional behaviors, from hopefulness to depression to anxiety — it’s a rough, repetitive mental cycle. A healthy person may not know how to console this sickly person. How does one become used to pushing their friend in a wheelchair when they used to go jogging together? How does one look at all the new sores and skin deformities when that person was once seemingly flawless? Acceptance. The sooner those around you accept what’s happening, the sooner you both can move on with your lives, together.

Those who have eliminated themselves from my life have done me a favor. The people who surround me now are my core supporters who hold me up on a very sturdy foundation of love and acceptance. Do I want to be encircled by a lot of people who are fair-weathered or by a few who have welcomed my struggle with open arms? Always remember that when it comes to those close to your heart, quality over quantity is key.

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Note: Scleroderma 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 Scleroderma News, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to scleroderma.