One Pain Patient’s Message to the World During COVID: I’m counting on you. Everyone is.

Isolation and holding back on activities are nothing new for those living with chronic illness. They’ve been here, and done that, and they need you to take notice.

I’ve lived with chronic pain and illness for a long time – almost 23 years. I was just 25 years old when I was diagnosed with fibromyalgia, asthma, anxiety and a handful of other chronic conditions. Since then, I’ve had to fight for my right to exist in a society that disempowers people with illness and disability. People like me.

When my asthma was so bad that I was getting chest infections four times a year, I would beg my first husband and my friends to be safe around me, but someone would always show up to our house with a cold, explaining it away: “I’m not contagious.” And of course, I would get sick. What was a cold for them would turn into walking pneumonia for me.

At other times, my friends and family would plan an outing with lots of walking. I would say, “I can’t walk that far,” and they would say “it’s not too far”... but a short hike for them would send me into a massive flare-up. For days afterward, I would suffer and ache and have trouble walking, bathing, and working.

The author, ChronicBabe Jenni Grover wearing a protective (and homemade) COVID mask.

Feeling Weak and Afraid

And always, always, I would be made to feel like I was being weak, or needy, or afraid. Always, I would be made to feel as though I had somehow deprived them of their fun by daring to be medically vulnerable. By daring to live in a body that defied not only me, but also my healthcare providers. 

For so many years, I have felt unsafe. I have carefully planned every aspect of my life around my pain, upending my career, filling my house with products designed to assist me, even building a massive online community for folks like me (so I could feel supported in my pain and suffering. And so I could teach people that it was possible to thrive in spite of chronic pain and illness. (Watch Jenni’s PPM House Call session on thriving through creativity on Facebook)

I purposely reshaped my life, to fill it with people who believe me when I say I have chronic pain and invisible illness, who respect my needs, and who make an effort to accommodate me. I married again, this time to someone who sees my physical differences not as deficits, but as part of my whole being, to be equally loved and cared for. I don’t make space in my life anymore for folks who can’t treat me as they wish to be treated – and, thankfully, my life today is a whole lot better for it.

 

COVID Has Re-Engaged My Anxiety

But as the COVID pandemic has taken over, my old fears have set in once again. I see people all around the country behaving irrationally, denying the existence and impact of this deadly virus. I feel unsafe and untrusting.

Even among my own friends and family, folks are getting tired of isolation and abandoning caution. One person told me that if they thought they had been exposed to COVID, they wouldn’t get tested because if they knew they were sick, they would have to change so much of their lifestyle. I had to explain that if they wished to enjoy any more socially distanced hangouts with me, they would have to change their tune. 

It's so hard not to scream out how much I have had to change my own life, completely, due to my health-related limitations. I find the insensitivity of those who don’t live with chronic illness to be infuriating. Those who bemoan having to make temporary changes like not going on a vacation or getting their hair done have no idea what it’s like to turn one’s life upside down – with zero end in sight. (How to deal with heightened or reopen anxiety).

I’ve had to turn down many friends’ invitations to socialize because they have a different view of what constitutes acceptable risk. For example, one pal invited me to a socially distanced backyard hangout, explaining that their family has been extremely cautious since the pandemic began to spread. I almost said yes …until I saw a stream of Facebook photos from their other gatherings, where different families intermingled, no one wore masks, and everyone shared food from the same serving dishes.

I’ve lost track of how many times I’ve had to remind those close to me to wash their hands or put on a mask or stand 6 feet apart. I mean, it’s exhausting being everyone’s mask mommy

So I find myself having flashbacks to my 20s, days after I developed chronic pain and illness, when nothing felt safe. I feel weak. Too cautious. Needy. A freakin’ killjoy. I should just “get over it” like they are, right? I should stop encouraging them to be safe. It’s none of my business how they conduct themselves during this pandemic.

 

We Need to Be In This Together

Except it is. It’s all of our business. Every time someone doesn’t wear a mask or doesn’t stand at more than arm’s length apart, their behavior affects me. And you. And everyone trying to make it through.

This experience is panic attack-inducing. I’ve cried a lot lately. I’m emotionally exhausted. And I’m scared. Like, really freakin’ scared. And I know I’m not alone with these thoughts.

If you’re reading this, you’re probably a person in pain or a caregiver of someone else who is struggling, which means you are struggling too. So I hope you’ll take a moment to really consider what it means to be safe, to make wise decisions not just for yourself, but for others, too – and to share this information. For the weaker ones, the more fragile. The older, the babies. The vulnerable. The disabled. People like me. 

I know you’re tired, but please be safe. You’re going to have to stay steady, even when you feel tired, even when you get that itchy FOMO (fear of missing out) feeling. Even in the face of pressure from others, we all need to stay steady and safe. I need you to stay steady and safe. You’re going to have to make sacrifices, and believe me when I say I know what that feels like; it straight-up sucks. But I know you can do it.

I’m counting on you. Everyone is.

 

...

More on managing chronic pain and chronic illness in our COVID resource center.

Jenni Grover is the author of ChronicBabe 101: How to Craft an Incredible Life Beyond Illness. She currently coaches people in the art of creative resilience and sells masks on Etsy. See her back story on PPM. 

 

Updated on: 08/12/20
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COVID-19: How Pain Patients Can Take Control (Infographic)
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