No, it’s not OK to discuss the fluctuations in my weight

NMOSD and its medications are difficult enough without stressful comments

Jennifer van Amerom avatar

by Jennifer van Amerom |

Share this article:

Share article via email
banner for

I’ve been thin. Very thin. And I’m currently overweight. Very overweight.

It’s not lost on me that in this lifetime, I’ve experienced both ends of the weight spectrum. I can make excuses for that, but the bottom line is that my body has endured sharp weight fluctuations for many reasons beyond my control, and I’m on a mission to stabilize my weight today.

As a child, I dreaded the first day of school. I was active and small-boned, and every pair of pants I owned had to be altered at the waist. Still, children would start a conversation with me by asking if I were anorexic or bulimic, which I found hurtful. In our journey through life, the impact words have on our mental health cannot be overstated. From childhood to adulthood, we encounter words that shape our self-perception, influencing how we navigate the challenges that come our way.

That’s particularly true for people like me, who deal with neuromyelitis optica spectrum disorder (NMOSD), a rare autoimmune disease that not only brings physical challenges like weight gain, but often seems to open the door for people to discuss our appearance.

Recommended Reading
A woman uses a laptop computer.

Tocilizumab found to be effective, safe for NMOSD: Meta-analysis

Navigating words and weight fluctuations

Weight fluctuations can become a significant aspect of the NMOSD journey, and especially so because people often feel compelled to comment on our looks. Discussions about weight can be deeply personal, even when our NMOSD and its effects are acknowledged. Even when these comments come from a good place, they still hurt.

One of the significant contributors to our weight fluctuation may be the medication prescribed to help us manage our condition. While such treatment is crucial for maintaining our health, its side effects, including weight gain, can lead to additional stress. It’s important we recognize that discussions about weight should be approached with sensitivity, as the subject can be emotionally charged and the details private.

While exercise can be a crucial factor in managing weight, shifts in our health can significantly challenge our ability to do that. Swelling, water retention, and pain can limit our ability to engage in regular physical activities, making it easier said than done to maintain a consistent exercise routine.

In the face of NMOSD’s challenges and weight-related comments, I’ve always found that cultivating mental resilience is paramount to how I approach my day. That involves developing coping mechanisms to navigate the emotional impact of words and focusing on my self-love and self-acceptance. Building mental resilience is an ongoing process, and I continue to be an advocate for professional support or counseling in that effort.

It’s difficult to ignore weight-related comments, but developing strategies to deflect that negativity can be empowering. Acknowledging the power of words, understanding the complexities of weight management in NMOSD, and fostering mental resilience are key components in building a foundation for overall well-being.

But the best way to overcome this horrible inner dialogue is through my community, which I’ve built using a strong support network of loved ones. These individuals reinforce and value the importance of genuine connections that go beyond the surface — including what I look like.

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.


Leave a comment

Fill in the required fields to post. Your email address will not be published.