On birthdays and chronic illness

When the forgotten feel even more forgotten

Photo by Florian Klauer on Unsplash

This year was the first time I celebrated my birthday not only as a person now fully cognizant (and mostly in acceptance) of my disabilities and chronic illness, but also as a Covid Conscious person (a person who continues to take precautions against Covid and other airborne/respiratory illnesses like the flu, RSV, measles, etc.).

Birthdays have always been a little tough for me since I’ve moved around a lot over the last ten years. Since 2015, I’ve had at least over eight different addresses around the world. My friends are scattered around the world. But I was okay with that. People reached out to me. I knew I was being thought about, even if I couldn’t see people in person.

Since developing Long Covid (along with ME/CFS, POTS, etc.), my world has become immeasurably smaller. I stopped having the energy to see people as much as I used to, but I also eventually realized I could no longer - in good conscience - continue to put myself and my health at risk by seeing people who didn’t take any precautions.

I had already experienced what Covid had done to my body. I didn’t want it to get worse.

While I was living with Long Covid for well over two years before I became fully Covid Conscious, I finally took the leap last fall and changed nearly all parts of my life. A lot of people were bothered by this change. Many of my family and friends were confused as to why I started masking all the time, when I wasn’t masking all the time before. They were confused why I was asking them to test before spending time together, even outside. They were confused why I was taking a virus/pandemic that was “over” so seriously. Many made and continue to make comments that hurt me deeply - whether about my masking, my testing requests, or my disabilities. I am often belittled by others over the very choices I “make” daily to keep me safe.

Some friends I’ve let go - sometimes because I simply can’t manage weak ties anymore with the limited energy envelope that I have. But others have let me go, perhaps because of the actions I take to protect myself (including masking and testing). Some have simply faded out after getting a pet, finding a partner, getting married, or having kids. In a society which doesn’t value community ties and prioritizes nuclear romantic relationships and units above all else, they very expectedly but disappointingly have shifted their priorities, time, and attention elsewhere.

Well before I got sick, I already knew that the typical “life escalator” (i.e., getting married, buying a house, having kids, etc.) wasn’t for me. I wasn’t interested in having kids and I wasn’t sure I’d want to get married. I did a lot of work to try to find and recognize my intrinsic value and worth, instead of getting it from external sources like prestigious jobs and accomplishments. Unfortunately, most people are happily riding the life escalator up, up, and far away from where I am, which is stuck at the bottom. Originally this was by choice, but now, it is because of disability and chronic illness.

I was happy to be on my own path before I got sick, but now the distance between me and my peers feels staggering and very much no longer by choice - whether financially, professionally, relationally, or otherwise.

I feel like I have receded into the background. I have become invisible.

I’d imagine this is the case for a lot of people with disabilities and chronic illnesses, especially those like me who develop or acquire theirs later in life and whose entire sense of self is completely shattered, leaving us utterly discombobulated.

I think about the sense of space I used to occupy in this world. In my own life. It felt expansive.

Now, my world feels impossibly small.

I see so many fewer people, so many fewer spaces are accessible to me (whether because of my disabilities or because of my Covid precautions), I have less energy to do the things I want or need to do.

I fade away into the background. I’m a shadow of my former self. A distant memory in the lives of those around me. A name they used to know.

Nowhere is this more apparent than in the celebrations of existence we call birthdays.

I used to relish my birthdays - often full of music, love, dancing, friends.

Now, they are reminders of all that I’ve lost and all that I go through on a daily basis. Milestones that remind me that for months I’ve been the only one wearing a mask in most spaces I enter. That remind me that my brain damage from Covid is getting worse and worse. That my muscles are atrophying. That I’m aging far more rapidly than I should be. That the world is moving on without me. That I’m going to have to keep going through this even though I don’t want to.

On our birthdays, our primary wish is to be remembered. To feel loved and recognized. To feel seen, when we often feel so invisible.

For those of us with disabilities and chronic illnesses, this wish is especially urgent and profound as we feel forgotten, abandoned, and left behind in so many aspects of our lives.

This year on my birthday, so many of my close friends - some that I’ve known for nearly 15 years, some I consider family, some that I talk to weekly - forgot my birthday. Even some of my family members did, including one I live with and see daily. The one day I wanted and needed to feel seen.

It broke me.

I did receive some lovely birthday wishes from other friends and family. Some sent me very thoughtful gifts. But I couldn’t stop thinking about all the close friends I didn’t hear from on the day of my birth. Wasn’t my birthday in their calendars? I have had their birthdays in my calendars for years because they are important to me and I don’t trust my memory. They hadn’t forgotten before. What changed this year? Is it my Covid Consciousness? Are they sick of hearing me talk about Long Covid? Are they just too preoccupied with their own lives now to take a moment to acknowledge mine? Perhaps keeping me in their lives reminds them of things they don’t want to have to think about or acknowledge any longer.

I could hear my therapist’s voice in my head, reminding me that I don’t need to search for external validation of my worth. That I can love myself and give myself everything I need. That ruminating is not going to change anything. That maybe they legitimately forgot but didn’t mean any harm by it, or that they had a good reason for not reaching out.

All these may be true, but I am also human. Even though birthdays are social constructs, and really no different than any other day in the year, we have all been conditioned to perceive them as special days full of recognition. I wanted mine to be special too. Especially since most of my other days in the year no longer feel like they have the potential to be special.

I’m a human who is living with some fucking horrible health problems I wouldn’t wish on anyone and who is not receiving the care she needs from her community. I am a touch and love deprived human. A human who feels invisible, and who feels like she’s losing her friends one by one. And on the one day I could have really used some care, it was missing, once more.

There may have been some thoughts and prayers sent in my general direction on my birthday this year, but sadly, they didn’t reach me. That’s the unfortunate thing - thoughts and prayers usually never reach their intended recipient. They usually require some kind of actual interaction to get all the way there. Last mile efforts.

It’s done, and I’m sad, and eventually I’ll move on. But I know that every year that this illness grows to take up a bigger proportion of my life, my life will continue to feel smaller and smaller, and the pain of being forgotten will hurt even deeper.

So, if you have any disabled or chronically ill friends, ask them for their birthdays if you don’t know them and write those dates down in your calendar. Send them a little note or call them on their birthday (or really any day) to let them know you’re thinking of them. Let them know how much they’ve impacted your life. Tell them they matter to you. Send them a funny meme. Write them a card. Show them you care. Do something…anything to make them feel seen, because often they feel like the world no longer sees them.

Note: Most of what I write is stream of consciousness, largely because I’m too tired and brainfogged with my Long Covid and ME/CFS to write differently, but also because it’s a nice experiment to be (mostly) unfiltered. Thanks in advance for excusing any typos, spelling mistakes, etc.