On privilege, self care and mental health

I am struggling to hold the both/and. This past week, and really the entirety of October, has been really hard on my physical body. I’ve had so many doctors appointments, tests and scans, all of which are incredibly mentally taxing. And my mental health is struggling in spite of it all.

Every time I talk about transplant life, about how grateful I am and how beautiful my life is, I also want to talk about this part. It’s always been both. I am grateful, and I have this life that was literally not possible prior to transplantation, and it is hard as hell and some days I am in debilitating pain and can’t get out of bed, and I’m fighting so hard I wonder if it is even worth it. Both can be true.

I’ve been blogging since I was a teenager, and during my early years I wrote openly about my mental health struggles. Writing has always been how I cope, how I let the truth exist somewhere other than in my body, how I survive and thrive in the midst of circumstances other people couldn’t even dream of. I’m also a baby millenial, right on the edge of when talking about mental health became acceptable. So every time I would write out the scary beast of depression or anxiety, my parents would get questions on whether or not I was ok, if I should be sharing these kinds of things on the internet, if this wasn’t just a personal problem and maybe I should get some help. I firmly believe more mental health support needs to be offered to chronic illness patients and their families. If I’d been given adequate mental health support as I was growing up within the medical system, I think my life might have turned out differently. But I also believe in talking about the hard things, not only because it’s healing for me but because there is power in shared stories and experiences.

I have disordered eating, highly affected by my physical state and due to having so many restrictions around food during my growing up years. And I notice when I’m in pain, or when my mental health is struggling, one of the things i do is avoid eating. That familiar eating disorder mindset kicks back in. This morning i called a friend and said, “You have to remind me to put nutrition into my body.” So while she took her morning meds on camera, I drank a meal replacement juice. In the past, I felt a lot of shame around not being able to have this delicious, nutrient rich meal, and it’s taking a lot to remember anything is better than nothing. Pre-made nutrition drinks are accomodations, and the world that tells me otherwise is an ableist one. So my friend and I sat on a video call, each doing these small, un-fun acts of self care.

Sometimes self care looks like taking your morning pills and drinking a meal replacement juice. Sometimes its cancelling appointments, staying in bed all day, just making it through. I’ve had a lot of those making it through days lately. And in a world that preaches green juice and 5k’s, bubble baths and a glass of wine, it can be hard to believe this is self care too. Self care doesn’t have to be glamorous to be real. And sure, I love a good bubble bath, face mask, green juice, spa day. But that’s not what is accessible to me right now. My body, and my mind, need a different kind of self care. Trying to deny myself the accomodations I need to get through the day is just a form of engrained ableism. Baking my own bread, homemade protein drinks, non toxic everything, only natural forms of pain relief isn’t a privilege I have right now. Maybe one day I’ll have the energy for that again, but where I’m at right now isn’t a sign of failure.

And as I called my friend from my bed, asking her to remind me to put anything into my body today, saying my anxiety is so bad I can’t move and I feel so overwhelmed, I said I’m quitting for the day. And she said “Oh, what a privilege.” And it is. I work from home, my job is flexible and works with me when I have bad physical health days or mental health days. I can adjust my schedule to go to therapy in the middle of the day, or do nothing for a day. And I know this is a privilege a lot of people who struggle with their mental health don’t have. Both can be true. I need accomodations and support, and I am privileged.

I live with chronic health issues, and I live in a country with free medical care, that i am able to access, I do not face racial discrimination when I seek treatment, I have a therapist who helps provide support for my mental health, I have a team of people that monitor my physical health. All of this is true, and at the same time I am in a female body in a system that caters to men and the patriarchial mindset, and I am disabled. It’s always a both/and.

Tomorrow on TransplantLyfe, one of my friends, Chet, is going to be talking about social disparity within the transplant system. As an African American man, he has an insight into this world I will never be able to have. His privilege is different than my privilege, his struggles are different than my struggles. And together we make up the transplant community. We grow, and encourage one another, and thrive here by talking about what is hard and what matters, and by listening to the lived experiences of others. And I’m so excited for Chet to be leading this conversation. It’s one you don’t want to miss, and you can access it all on www.transplantlyfe.com