20 Ways to Observe an Illness/Disability Anniversary

The anniversary of a life-changing illness – like a major loss or traumatic experience – is remembered by our bodies even if we would rather forget. Finding ways to honour these dates can help process grief and other tough emotions that arise around them. It can also help us consider what supports we need. And it is an opportunity to celebrate that we have survived.This may not immediately seem like a joyous occasion, but survival is no small feat and our disabled existence is worthy of celebration! Crip elders and ancestors show us the importance of observing these moments, and science backs up the importance of remembering and ritual, too.

Not coincidentally, today marks 3 years since my life-changing COVID-19 infection. As I considered how to observe this one, I realized I was developing quite a good list. There might be something for you, here, too! I hope you find a meaningful way to mark your own illness/disability anniversary. If you aren’t disabled or chronically ill but have experienced a major and/or traumatic loss, there are probably some ideas here for you, too.

1. Reflect & journal

Get out that weathered notebook, or buy yourself a new one for the occasion! Open a word doc on your laptop or a notes app on your phone. Use voice to text or record a voice note. Perhaps list some affirmations and gratitudes. Maybe you need to honour your anger with a “fuck you” list (this can include people, systems, places, experiences!) You might reflect on moments of disabled joy throughout your year, or moments of resilience. There are many illness and disability themed journal prompts out there. For example, I post a monthly prompt on IG. There is no wrong way to journal and reflect!

2. Have a photoshoot

Celebrate your badass disabled self by posing for photos with the self-timer on your phone or booking a professional photoshoot with a covid-cautious/-conscious photographer in your area. It can be just for you or something to share with others. A few ideas: include your mobility aids and medical devices; get fancy and dressed up or take photos depicting your everday life and meaningful rest spots; do a boudoir shoot to celebrate your amazing, beautiful body that is still here and still living.

3. Learn something new about disability or chronic illness culture

My latest plan in this regard is learning more about D/deaf culture and sign language.

4. Ask for support

I recommend practicing this on the regular – it does take time to unlearn all the ways hyper-individualism has been ingrained in us – but what better time than now to start asking for specific support from your inner circle? Maybe you need a few friends to check in with you on that day or week. Do you need someone to come and be with you in person? Ask someone to take a stressful thing off your plate. If you’re a parent, I bet you could use some childcare so you can tend to yourself more fully! This might be a perfect time to accept that financial support someone offered, or the frozen meals they want to make for you. Whatever it is, ask for it. We all need each other and cannot survive this life without others. You deserve support as much as everyone else does.

5. Order custom clothing or jewelry

This year I considered ordering myself a t-shirt that said “Chronically Fabulous” or something similar. There are lots of fun items out there on Etsy, RedBubble, and more. How about some rainbow compression socks? Or, if you’re feeling more practical, a medical alert bracelet.

6. Cry and laugh, as able* and as needed

You could probably use a laugh and a cry. Schedule it if you must. Listen to sad songs. Let yourself feel what you need, if you can. You are human with a full range of emotions. Feeling sad, angry, betrayed, forgotten, grieved, broken-hearted, depressed – these are valid emotions and you are not negative for having them. Let it out. And consider having a plan of support in mind if you are feeling overwhelmed by your emotions, like letting someone in on how you’re doing, or having a mental health first aide plan in place.

*Remember to pace yourself. Feeling emotion is exertional!

7. Practice a ritual

This year I plan to light a candle for my old self and another one for my new, chronically ill self. You could also write down something you need to let go of and burn it in a fire, or use a video recording of a fire and speak the words into it. Another practice I’ve participated in – guided by Cassandra Lam of Collective Rest – is to speak the things, words, feelings, thoughts, desires that you have for yourself and your life into a glass of water, and then feed that water to a living being – whether yourself, a plant, or the earth.

8. Smash something

Smash that coffee mug your ex gave you. Shatter that picture frame with the photo of the friend who abandoned you when you got sick. If breaking stuff feels too messy or dangerous or just not for you, try another somatic activity. Squeeze a couch cushion or stuffie/squishy super tight. Scream into your pillow and punch it. Rip up or scrunch some paper. Don’t forget to pace yourself if you have an energy-limiting illness.

9. Eat treats

If you love food and are able to partake in celebratory eating like me, this one is for you! Today, I will be eating sushi and cake with a meaningful phrase written on it.

10. Watch a documentary

A few suggestions: Unrest – free on youtube; How to Survive a Plague – my library had it; Crip Camp – Netflix

Disabled activist, Alice Wong, also has a list of recommended films at her blog, here: Documentaries to watch after Crip Camp

11. Get a tattoo

Art on your skin as a personal commemoration of your survival, experiences, identities? Sounds deeply special and spiritual, to me!

12. Book a therapy session

Therapy is not accessible or safe for everyone. And if you do not already have a therapist you’ve developed some rapport with, meeting a new one at this moment in time could add to overwhelm. You know yourself best, though, so if now is the time to start therapy*, you’ve got this! Some other ways to access counseling/psychology/therapy ideas might be by listening to a podcast series or reading a book, a blog, or social media post by a reputable therapist – such as someone specifically intersectional or who is disabled themselves. A few people I follow/read are: Dr. Hillary McBride, Dra. Rocio Rosales Meza, Ndeye Oumou Sylla, Rise (of Riotous Roots), and Nedra Tawwab.

*If choosing a therapist for the first time, look up some questions to ask and types of therapy approaches that exist to help determine what you’re looking for. Not all therapists are the same! And some approaches or individual therapists’ beliefs can cause harm. It’s okay to ask questions and determine if someone is the right fit. It’s okay to decide it’s not a fit and you need to seek someone new.

13. Give to a mutual aid fundraiser or a disability-led org

A couple to consider:

1) Tracey Hazie Thompson, Long Covid advocate in Canada: https://www.gofundme.com/f/9apnu9-medical-treatment

2) Queer, disabled and chronically ill femme in Ontario, Canada needs support for housing. Goal: $7000 Received: $1703. E-transfer: info@calgarychurch.ca Please add the comment “mutual aid” to your e-transfer.

14. Sign a petition or write a letter to a government official

The perfect occasion to advocate against injustices in our communities and world. For example, urging government to invest in clean air infrastructure in public spaces in this current context of pandemic and climate change.

15. Plan a virtual or outdoor gathering

If you are able to socialize, this might look like a party with loved ones. Or it could be a vigil to witness your old self and your current experiences. Maybe some body-doubling art creations and expressions as a group. Make it what you want and need – with who you want and need.

16. Create a disability reading list

Some great reads to get you started…

Non-fiction: Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha; Demystifying Disability: What to Know, What to Say, and How to be an Ally by Emily Ladau; My Body is Not a Prayer Request by Amy Kenny; Black Disability Politics by Sami Schalk.

Fiction with disability rep: Get a life, Chloe Brown by Talia Hibbert; Six of Crows by Leigh Bardugo; Gallant by Victoria Schwab

Children’s: We Move Together by Kelly Fritsch; Bodies Are Cool by Tyler Feder; My Autistic Mama by Kati Hirschy (on my TBR list but I’ve heard good things! The author has a preview on her TikTok and IG.)

17. Set an intention for the year ahead

Perhaps you want to further unlearn your internalized ableism. Maybe you want to better pace yourself (aka care for yourself) or participate in some advocacy activities. You might plan to make some new, disabled friends. Or begin each day with an affirmation for yourself, with a hug from a loved one, or by remembering something you love about yourself.

18. Buy yourself something nice

Whether it’s a bouquet of flowers, a new book, or those comfy slippers you’ve been eyeing: go for it. You deserve something special!

19. Make art

Paint. Draw. Sketch. Knit. Write poetry. Photograph your world. Cut up letters, receipts, or images and make a collage. Art is what you make it, and I am a big believer that we are all creative. You do not need to consider yourself “an artist” to partake when creating is innately human! Drop that perfectionism, play with some colours and materials, and enjoy.the.process.

20. Connect with disabled community online

If you are (or were) an allied healthcare worker living with Long COVID, check out the Long COVID Physio peer support group on Facebook, or follow them on social media. Explore the hashtag #LongCovid on Twitter/X – there’s still a lot of community activity there even with so many changes the past couple years because of a certain billionaire… A few other online communities I’ve come across: Sick in Quarters; Sick Stories; Health Justice Commons; Disability Reframed; Corporeal Writing’s Sunday Spoonies group; Long COVID zoom. (I have not attended all of these but can vouch for SiQ and HJC being great wrt accessibility and centering QTBIPOC.) There are a lot of opportunities to find virtual community with other disabled and chronically ill folks out there – you just have to start looking!

Whatever way you choose to observe this time, I hope you know you are loved and are needed here. Your existence matters. Hold yourself gently through this time of remembering, honouring, and observing this anniversary of change and loss.