How My Friends Have Chosen to 'Be There' During My Lupus Journey

When you are diagnosed with a chronic illness like lupus or fibromyalgia, it’s a gross understatement to say it’s life-altering. Everything you knew about your life changes. Whatever plans you had for the future are now forever impacted in some way. The little earthquakes it will create will resonate throughout your entire life, personal, professional and family. They will be lifelong and some can be devastating.

Yet, in the midst of this soul-crushing darkness, there can be spots of brightness that can also make you weep with joy. By the time I got my official diagnosis of lupus, I’d been through a 15 year hellish holding pattern of doctors visits, tests, more doctors, red herrings and frustration after frustration. “Mixed-connective tissue disease,” “pre-lupus,” “lupus-like,” all terms used to describe the combination of symptoms, but no definitive lupus diagnosis until an echocardiogram after a stress test showed a pericardial effusion (fluid around the heart).  This was the final diagnosis criteria to push me over the edge into “The Land of Lupus.”

In some ways, getting that diagnosis is devastating, yet in others it’s a relief. I finally had an answer. After 15 years of living in this world of uncertainty, the thing that was tormenting my body had a name. Instead of being “the monster under the bed” that haunted my dreams, we finally had a foe to fight. The nameless, faceless beast had a “ribbon color,” a community, a cause I could get behind. As lousy as it was, better the devil you know than the devil you don’t.

I also thought that once it had a name, some of the people in my life who didn’t take my illness seriously, would finally understand that this wasn’t “all in my head.” If they took the time to read about lupus, they would know I didn’t “bring this on myself” through choices in diet and exercise. I couldn’t fix it by “eating right, exercising and taking the right vitamins.”  Somehow I thought that by giving name to the foe, I would have a united army behind me, ready to march into battle. I’d seen how those had rallied behind friends and family with cancer and somehow thought this would be treated the same.

I’m not saying I expected the world to suddenly start wearing purple and burst into “Kumbaya,” lifting me on their shoulders, vowing to stand by my side through all of the chemo treatments, while shaving their heads as I lost my hair. I just somehow thought those closest to me would educate themselves and be there.

But, this isn’t a piece about those who weren’t there. I’ve had to make my peace with that (and them) and those people who, for whatever their reasons, chose not to be there. This is very common for those of us with chronic illness  Losing friends and family comes with the territory. But, the side benefit is you find out who is truly there, who you can really count on. And some are really surprising.

For me, I’m blessed to have an extended village of support that starts right in my neighborhood. We live on the kind of old fashioned block where you know your neighbors and do go next door to borrow a cup of sugar. I can’t say enough about our amazing neighbors that have become family. After 17 years of family BBQs, birthday parties, weddings, graduations and more, they’ve also become our family’s “go to” in times of crisis. They are the reason my children have never seen me taken away in an ambulance.

With one simple text or call, Barb springs into action and my children are quickly whisked away to the comfort and familiarity of her basement playroom with her daughter. When I’m stuck in the ER and can’t make it home to get the kids, I know with one call at least four different neighbors that can and will be there for my children. This group of friends has been there, always inquiring as to how I’m doing, and really mean it.

When they notice my car hasn’t moved in a few days, they check up on me. They’ve been known to send over food when I’ve just gotten out of the hospital. They are there for my kids and husband physically, emotionally and spiritually.  But best of all, they don’t treat me any differently. Yes, I’m sick. Yes, I miss a lot of things. Yes, I provide a lot of “excitement” on the block when the paramedics have to be called, but ultimately, they look past and always remember that I’m still Amanda. They don’t treat me with “kid gloves” – they tease me, we laugh, we joke, we cry, we have fun! And for that I’m forever grateful. And there are others.

I have friends who understand and educate themselves so they can be there. My dear friend I work with who graciously drives me on those days I am unable. She checks in on my on days I don’t seem my best to make sure all is OK. When I needed surgery, she watched the kids so that my husband could be there with me and they would be with “family,” playing with her daughter who is their good friend. Our families go on vacations together and there is an unspoken understanding that I can do what I can, without having to apologize or explain. When I need to vent about the uglier aspects of Life in the Land of Lupus, she’s there, but just as much when I needed a dress for my son’s Bar Mitzvah. And, she and my other friends understand when I cancel plans at the last minute, no matter how long ago we set them. They know I can’t help it and would do anything to change the outcome.

Lifelong friendships that have sustained despite distance and busy schedules. Friends call, email and text, just to check in and see how I’m doing. Friends have taken time out of their busy schedules to visit me in the hospital, organize and deliver meals to my house when I was going through the worst of the chemotherapy. Friends have driven me to doctors appointments, held my hand and even stood up to doctors for me when they were out of line. Friends have come to visit me when I was stuck at home for weeks at a time and sat on the couch with me, just to keep me company – ignoring the fact I was a hot mess in serious need of a shower. Friends have contributed to the cause and even participated in the “Walk with Us to Cure Lupus.”

I can’t even begin to describe how much it means to see someone on social media participate in “Put on Purple” day or World Lupus Day. Just the simple act of wearing purple to me is the single greatest act of saying, “I understand and this is important.”  I participate in every “color wearing” from pink for breast cancer to blue for autism. When I see that someone in my life that has taken the time to educate themselves and step out as an advocate for Lupus awareness, it means more than I can ever articulate. It may seem like such a little thing, but it brings tears to my eyes when I see someone bringing awareness to this disease that has upended my life. It’s a validation, an unspoken nod of agreement that this disease sucks, it’s a statement of support.

Yes, being chronically ill has robbed me of a lot in my life. But, conversely, it’s provided me with a bounty of blessings. Most people have no idea who is truly in their corner and who will be there when “the chips are down.” Well, in the past several years, the chips have all dropped, and I can safely say I know who has my back. I never have to question who will be there for me and my family when things get rough since we’ve been through hell and back. As my beloved Grandma Viv used to say, “It’s quality, not quantity,” and I wouldn’t trade one person in my support system!