What It Really Means to 'Be Positive' in the Face of Chronic Illness

Let’s set the scene. It is gray and snowing. I’m about to head to my doctor’s office for my seventh infusion of Rituxan, an immunosuppressive that is being used to treat my recent flare-up of uveitis and vasculitis. It is March 31st and I’m getting married in t-minus four months. My head is pounding, my vision is blurry, I didn’t sleep well the night before and I feel myself start to panic.

I send a text to a close friend, the result of my fingers spewing a stream of anxious thoughts about my health and prognosis. No more than a minute later does my phone ring, with the same friend on the other end of it. I apologize profusely for bothering her so early in the morning and for being an anxious mess.

Her response: “Talk to me, what’s going on?”

My response: Tears.

I pull into a parking spot and start crying – something I haven’t done in a while. Emotional breakdowns when you have a chronic illness are common; they happen when you have a flare-up, they happen when the doctor tells you they aren’t sure what direction to go in – they just happen. A part of me always argues with myself that I have been going through this for seven years and I shouldn’t be crying anymore. (As I reflect on this, I say that part of me can take a seat – my tears are legitimate and I’m going to cry if I want to.)

I explain to her that I’m sick of being sick, that my symptoms aren’t getting better and the infusions don’t seem to be working. I ask the “what ifs” as they relate to my wedding – what if I’m not better by the time the wedding is here? What if I have to have another surgery or another type of immunosuppressive in the weeks leading up to it? What if the medical bills become too much that I can’t pay the last down payments for the caterer or the photographer?

I cry. I cry and she lets me, and she doesn’t tell me it’s going to be fine or that the doctors will figure it out. She treads lightly, telling me just to “be positive,” because she knows it’s harder than that. She tells me it’s OK to feel the way I do, and to let myself be emotional (something she knows I try to stay away from, as vulnerability is scary and horrible, right?). I cry some more and eventually say I have to hang up because I was half an hour late for my infusion.

The nurses ask how I’m feeling as I walk into the infusion suite, causing my eyes to start to well up with tears again. I tell them not great, that I have a monster headache and my joints are stiff and achy. I try my hardest not to cry in front of them.

And then I sit in my usual chair and unpack my laptop and a book I’m reading and wait for them to start up the meds that will drip into my body for six hours. I’m reading a book called “Buddha’s Brain: the practical neuroscience of happiness, love, and wisdom” by Rick Hanson, PH.D. I thought I was reading it simply as a resource for work with my clients in therapy.

About 20 minutes later I am hooked up to two separate IV’s and open the book to where I left off in chapter 4.  I realized then that the book is meant just as much for me as it is my clients. I read:

“Given the negativity bias of the brain, it takes an active effort to internalize positive experiences and heal negative ones. When you tilt toward what’s positive, you’re actually righting a neurological imbalance…Focusing on what is wholesome and then taking it in naturally increases the positive emotions flowing through your mind each day.” (p. 75)

I paused. I put the book down and reflected back on my morning and how terrible I had felt. I thought about how I berated myself for being emotional, how I fought back tears every time I spoke and felt as though there was nothing to “think positive” about. And then I reread that paragraph and again paused.

What had been a positive experience today? What was something wholesome I encountered?

I laughed. I laughed because when the nurse was setting up both IV’s, the cords became tangled and angled in a weird way that required her to tape them down in a manner that made my arm look like a mummy. We cracked jokes and told the other patients to watch out for her tape jobs. Then I smiled. I smiled because those nurses, who I’ve seen for about six hours every week for the last seven weeks, remembered my name, my symptoms and my needs without looking at a chart or file. They asked how I was doing, they sat and talked with me, they joked about turning me into a cheap-looking Halloween character. I felt a wave of relief whoosh over me as I allowed myself to recognize that I was extremely lucky to have them, for they provided love and comfort during long, painful days of treatment.

And then I reflected back on the fact that my friend called me at such an early hour and gave me permission to cry and feel frustrated and worried. I was reminded that I have a support network of wonderful people who are there for me whenever I need them to be. I reread the section in the book for the third time and meditated on that which was wholesome – the ability to laugh, the care and love of my providers, the friends and family I have by my side. I took a few deep breaths and pledged to myself that for the rest of the day, I would not be stuck in my negativity, but rather would remind myself constantly of these small, positive moments.

Living with a chronic illness provides plenty of room for negative thinking and defeatism. The daily struggle to feel even slightly “OK” is enough to drain you of any positive energy you think about maybe wanting to harness. It was by the grace of God or the universe or whatever entity you want to ascribe to that I brought “Buddha’s Brain” with me that day, for I was reminded that I owe myself positive thoughts and experiences even in the worst of times.

The end of the chapter reads:

“Taking in the good is not about putting a happy shiny face on everything, nor is it about turning away from the hard things in life. It’s about nourishing well-being, contentment, and peace inside that are refuges you can always come from and return to.” (p. 76)

I encourage everyone who lives life with a chronic illness to take this truth and hold it close. “Being positive” doesn’t mean we can’t hurt, we can’t cry, we can’t feel frustrated. It just means we have to consciously channel our energy to that which makes us feel even slightly less horrible for one moment. No one expects us to be perky and happy about our illness; we do not have to always feel happy about our circumstances. And yet we can find some peace and reassurance that we are loved, that we can laugh, that we still have positive experiences in the worst of times. Finding happiness doesn’t negate our struggles or minimize what we each deal with; rather, it allows some normalcy back into a life that simply doesn’t feel normal.

Go forward, friends and survivors, and take in the good of each day as much as you can. Meditate on that which is wholesome, and keep pushing through the painful moments. And remember: You’re not alone.

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