How I Learned to Adjust to Loss After My Diagnosis

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by Lelainia Lloyd |

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Fourteen years ago, when I was in the process of being diagnosed, I suffered a major neuromyelitis optica (NMO) attack on my spinal cord. The resulting transverse myelitis robbed me of the feeling in my arms and hands.

As an artist, this was utterly devastating. My manual dexterity was deeply affected. Simple tasks like buttoning and unbuttoning my clothes, putting a key in a lock, or holding a mug of tea became an enormous struggle. It felt as if I were doing everything with oven mitts on. It was both frustrating and demoralizing.

Five months later, with my best friend in tow for moral support, I had my first neurology appointment. I was scared and needed answers. Pre-diagnosis, I’d had several spinal cord attacks over the years that had left me with no feeling from my waist down, and while I couldn’t feel my legs, I was somehow still able to walk. In these early attacks, the lack of sensation would last up to five months, but eventually, it would resolve on its own and I’d be fine. Somehow I instinctively knew this attack that was affecting my arms and hands was different.

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When I sat down with a nurse practitioner, I asked them where the line in the sand was for any hope of a meaningful recovery. At what point would I know the damage was permanent? They seemed confused by my question and responded that I just needed to accept what was happening to me. I tried to rephrase my question, but they reiterated that I just needed to accept my new circumstances.

I felt so frustrated by being unable to communicate what I wanted and needed from them that the emotion quickly spilled over into tears. Seeing this, my best friend interrupted the nurse by saying, “It’s OK to not be OK.”

When I think about that experience all these years later, it still upsets me. Having someone tell me I should just accept that my body had betrayed me in such a major way was painful. It would have been infinitely more helpful to have had the fear and grief I was experiencing acknowledged in that moment. Instead, it was minimized before being dismissed entirely.

Being told I should just accept the trauma felt like a judgment; if I was struggling with what was happening to me, I was “doing it wrong.” It made me feel like I was failing somehow, like I wasn’t being a “good patient” because I was questioning the status quo.

In hindsight, I realized that what was most important was not that I accepted the life-changing illness I was diagnosed with, but that I had found a way to adjust to it.

The truth is that each time I lose something important to me to this disease, I grieve. Living with a chronic illness and the resulting disability it causes is an ongoing trauma in my life, so the grief also is ongoing. It doesn’t mean I’m in a state of sadness all the time.

Over the years, I’ve learned to adjust to my circumstances, and I have a great life. But to do that, I must allow myself space to process how I feel about what is happening to me at any given moment.

As my best friend wisely said to me all those years ago, it’s OK to not be OK sometimes. One of the best things I can do for myself when I’m not feeling OK is lean into those feelings and sit with them for a while. Acknowledging that I’m feeling sad, angry, or frustrated — and sometimes all three at the same time — helps diminish the intensity of those feelings so they’re more manageable.

I’ve learned that leveraging my experiences to help others helps me cope. Shifting the focus from “Why is this happening to me?” to “What can I learn from this experience?” helps make sense of something that feels so cruelly unfair.

I also remind myself that it could easily be worse, and it’s a good reminder to be grateful that it’s not. I consider myself a realist with a heavy side of optimism, so while I never cross into the dangerous territory of toxic positivity, I believe that gaining perspective is a good tool for finding balance in a life that is challenged by loss and pain. And to gain perspective, it’s important to understand that grieving your losses is a step toward being able to adjust to living with them.

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Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.

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