On Living with Chronic Illness
It’s 12:26AM. I went to bed earlier in the evening, but woke up with the all too familiar experience of what feels like my body shrieking for help. I try tossing and turning in bed. Maybe if I pretend I don’t feel it, I can fall back asleep.It is strange how chronic illness has the ability to make time feel both short and excruciatingly long. 5 minutes with an incredibly painful shooting of pain in my body can feel like eternity AND I can sleep an entire day away and watch time slip through my fingers.
By this time now, I’ve given up trying to ignore my pain and have moved to the couch. My dog greets me with her wagging tail as I assume my fate—plugged in heating pad and ready to invest in any possible distraction in the form of my TV. It’s going to be a long night.
Living with chronic illness can look like so many different things. Tonight, living with chronic illness feels lonely. Don’t get me wrong, I have an incredible support system of fellow disabled and non-disabled friends. I try my best to be vulnerable with others about the pain I’m in and the toll it takes on me. But right now, in the middle of the night, it feels pretty damn lonely.
So many thoughts race through my head. Am I going to have to message the team at work that I need to stay home for the third day in a row? Am I going to be able to sit through this pain and be present enough to help other people in the morning? Is this what the rest of my life looks like? Should I start googling more about my current symptoms?
If you also find yourself up in the middle of the night because something in your body hurts, this one is for you. I’ve compiled a list of five reminders I need for myself and hope that a few of them feel as grounding for you as they are for me.
First of all, I’m so sorry. I’m sorry that our medical system in the US is shit and I’m sorry that you relate to this post.
It’s okay if you find yourself in a research hole. Sometimes it feels stabilizing to fully immerse yourself in the articles, reddit pages, etc. You may not have all the answers, but knowing that might be answers somewhere is what we need to get by. On the other hand, it’s also okay if you need to take a step back from the research! If you’re anything like me, sometimes I need to stop myself and acknowledge that if I let these racing thoughts go, I’m about to go into a full blown spiral.
It’s okay if you need to cancel plans at the last minute. Living in this body is a full time job, and overextending yourself hurts in the long run. If people aren’t able to hold space for the fact that living with a chronic condition is unpredictable, I hope you can find a community of others that can.
Grief of living with chronic illness is very real! Whether you were born with a disability, or developed your condition later in life, grief may still be a part of the process. Be gentle with yourself and the emotions that come with navigating chronic illness.
It’s okay if all you did today was sleep. In fact, it is encouraged. Rest is restorative and incredibly important. On some of our worst days, it is the kindest thing we can do for ourselves.
If you’re navigating chronic illness, bring this up to your therapist! I’ve found so much healing in being able to talk about my disability with my therapist. If you’re in search for a therapist, consider finding one that has lived experience and truly knows what it’s like to navigate disability. If you’re looking for a spoonie therapist who intimately knows the challenges of living with chronic illness, we’ve got you covered!
Gaby Teresa is an Associate Marriage and Family Therapist, Latina/mixed raced, social justice-oriented, and exceptionally curious. She works with individuals, intimate relationships, and families. She is passionate about supporting undocumented immigrants, Latinx, & BIPOC folks to explore and unpack the harms of systemic oppression & white supremacy and move towards individual and collective healing from racial trauma.
From a Health at Every Size perspective, Gaby challenges fat phobic narratives and helps people adopt amore loving relationships with their bodies by promoting body diversity and dismantling the “thin ideal.”Overall, Gaby is proud to be another messy human walking alongside you, helping you to build tools and relationships that better support you and ensure that you get your relational needs met.
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