How Relationships Provide Essential Support for NMO Patients

Brené Brown's BRAVING approach elaborates on the features, importance of trust

Jennifer van Amerom avatar

by Jennifer van Amerom |

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The greatest challenge I’ve had to overcome as someone with neuromyelitis optica (NMO) — something I’ve heard echoed by other patients — is the need for better support. This begins with the expectations we each have of those in our lives. When those expectations aren’t met, we feel disappointed and lonely, and suddenly, there’s another hurdle alongside the practical needs of having NMO.

As a part-time professor, I teach my students how to build healthy relationships. They’re our future leaders, and I want them to approach that responsibility by recognizing that we’re human beings with feelings and expectations. When I was diagnosed with NMO, I discovered that many of my professional skills were transferrable to how I approach living with this rare disease.

Lecturer and bestselling author Dr. Brené Brown has a definition of trust that I teach to my students and have adopted into my own life, especially when I need to ask for support. Brown uses the acronym BRAVING to define trust, which I believe is the foundation of every relationship.

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B – boundaries

We need to set healthy boundaries in our lives and make them known. As a patient, I define what I’m capable of and willing to endure. My family enjoys rock climbing. I’m able to participate, but on the rare occasion I have a tough NMO day, my extremities feel numb, and I just can’t go.

My family recognizes that forcing my body into this activity is a boundary we shouldn’t cross. They might be disappointed that we aren’t going together, but they never complain, which is how I feel supported.

R – reliability

Being reliable applies to your support group and how it’s there for you. Not sometimes, but every time. They can’t pick and choose when they want to be reliable. If there is someone in your life who sometimes falls short of your expectations, recognize their boundaries and come up with a solution together that helps you both feel supported.

Even as a patient, I sometimes take on more than I can handle. I always intend well, but if I’m about to fall short, I need to say something and ask for help.

A – accountability

Brown says, “I can only trust you if when you make a mistake you are willing to own it, apologize for it, and make amends.” Trust only exists if when we make a mistake, the same rules apply. Our loved ones don’t always get it right. Supporting someone with a rare disease is scary, unpredictable, and sometimes exhausting. We need to make allowances for each other.

V – vault

When we share something with others, the expectation is that it’s kept in strict confidence. This is important for patients who sometimes need to vent, or when they’re faced with uncertainty.

Brown highlights a term she calls “common enemy intimacy.” When someone gossips about someone else to you, we feel closer. But it’s fair to question if they exhibit that same behavior about you to others. Are they truly guarding your feelings?

As a patient, we need to feel safe when we speak to others in our support network.

I – integrity

To feel supported, we need to be able to predict how others will behave in a situation. Brown says we need “courage over comfort; choosing what’s right over what’s fun, fast, or easy; and practicing your values, not just professing them.” I often wonder if it’s more difficult to be the patient or the person in the support role who feels helpless and unsure of what to say.

During one of my attacks, the nurses made 14 attempts to get the IV line into my arm. My sister watched in horror; we both hate needles. But I knew she would stay with me in the ER that day because her actions are predictable to me.

N – nonjudgment

My friend was recently diagnosed with cancer. We have spent some late nights on video chat in tears together. I don’t judge her or think less of her for being vulnerable with me. In fact, I think she’s very brave. What I’ve realized is that I’m incredibly hard on myself. I assume others think less of me when I’m vulnerable, which is untrue.

G – generosity

In a perfect world, people will say what they mean without an undertone of judgment or a personal agenda. To feel supported as a patient, we need to operate from a place where we believe what our loved ones say to us, where we assume best intentions. Maybe they don’t always get it right, but I know that my support network is not working against me. Taking words at their face value eliminates confusion, and if it’s said wrong, there’s no harm in asking for clarification.

Long ago, I decided that it was unrealistic to expect every person in my support network to be there for me in every way I need them to be. We all have our strengths and weaknesses. I share my true feelings with some, ask for help raising my daughter from others, and only let certain people see me cry.

Overall, I have what I need in terms of support. When there’s an area lacking, I now have the vocabulary to break down what’s missing, which makes the dialogue about support much easier.

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 providers 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 (NMOSD).


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