unseen…

Earlier this year, I wrote about a family reunion trip to Lake Tahoe and how I had to miss out on most of the activities due to postural orthostatic tachycardia syndrome (POTS), mast cell (MCAD), and migraines. I talked about being left out of the social activities and how I felt invisible when the rest of my family would tell stories and laugh about the day’s activity in which I was unable to participate, or would exchange phone numbers and email addresses without asking for mine. Sometimes with an invisible illness, the illness isn’t the only thing that’s invisible.

During the summer after my first year of law school, I developed severe stomach issues (which was later diagnosed as mild gastroparesis). I was constantly nauseous and vomited at least a couple times per day. I lost 8 lbs the first week because I couldn’t eat. I ended up having to drop out of school for a while and move back home to get treatment at the Mayo Clinic. 

It was hard to abandon the life I thought I was building, but what made it so much harder was that no one else seemed to notice I had abandoned that life. For about two weeks after I left, my law school friends would email or call to ask how I was. But after those initial two weeks, there was nothing. Crickets. Even some members of my (non-immediate) family largely ignored me. Or forgot about me. I don’t know if they thought I was faking it, or they didn’t know what to say. Or if they didn’t care.

When I finally returned to law school a year later, I had to make all new friends. I endured a similar experience when I first started showing POTS symptoms years later. I learned early that when you get sick, people leave.

I think sometimes people don’t know what to do with our invisible illnesses. We look fine, but we’re not, and I think that challenges the simple dichotomies we create to make sense of the world: people who look sick are sick, and vice versa. And being young means being healthy, and vice versa. And healthy people contribute to society.

And vice versa.

I always imagined that if I had a more visible illness, people would be more understanding; that if I had lost a leg due to diabetes, or lost all my hair due to chemotherapy, people may have called. But after last month, I’m not so sure.

When my grandmother was dying in the hospital last month, I spent everyday with my mom, for 10+ hours per day. I got to see firsthand what it must be like to be her. 

My mom looks sick. She’s down to under 100 lbs (45kg). She’s wheelchair-bound. One of the symptoms of her illness is that she’s unable to move her eyes, so she doesn’t look at you when you’re talking to her. It’s difficult for her to move her neck, so her head is always tilted back, staring up at the ceiling. She speaks slowly and softly. She chokes on almost everything she tries to eat or drink, so her face and clothes are often smeared with food, like a child.

It’s lonely being her. No one addresses her directly. Even close members of her own family talk about her to my sister and I right in front of her face, as if she wasn’t there. She has one friend who comes to visit her regularly, but the others, including friends she has had for 40+ years, are absent. Once a year they might email or text me and ask how she’s doing. When we’re out in public, strangers don’t look at her, they look at me. They talk to me. They ask me if she’s hungry, or if she needs a jacket, or if she can hear the t.v. They treat her like she’s an empty wheelchair, not a human being.

Sometimes she wonders aloud why everyone has forgotten about her, why no one seems to notice she is missing from her life, or theirs. She wonders if they will notice when she dies.

I get it. It’s hard. They have a life. They have responsibilities and deadlines and grandkids and dying parents of their own. They don’t need the subtle reminder of their own mortality, that death’s grasp always hangs loosely at their throats. Maybe they don’t even have anything in common anymore, especially now that she’s not physically capable of walking or carrying on a conversation or doing anything.

But you know what, go visit her anyway. If you have a friend or loved one that is sick or disabled or invisible for some other reason, please go visit. Give them a call. Not because you hope someone will do the same for you one day, but because you hope they will do the same for your father or your daughter or your dog. Do it because when she asks why no one cares, I lie and tell her that you ask about her all the time. Do it because she’s a fucking human being.

The holidays can be a lonely time of year, especially for people who are unable to participate in holiday activities, or can’t travel to be with loved ones, or worse, for those who have become invisible to their family and friends. I thought about writing a post about great gifts for people who are sick (and if you’re interested and it’s not too late, some of my blogging friends have written some great ones you should check out), but if you want to give a great gift, give literally one minute of your time. That’s all it takes to make someone feel seen.

Because of the 525,600 minutes in each year, certainly you can spare one.

“The problem with the world is that we draw our family circle too small.” – Mother Theresa

Smell ya later.
– Linds