I’m not alone when illnesses lead me to my breaking point

Remembering that our feelings are OK can help us manage stress

Jennifer van Amerom avatar

by Jennifer van Amerom |

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Everyone has a breaking point. It’s natural to feel overwhelmed by sadness, depression, or anxiety when life’s pressures become too heavy. Those of us who have chronic illnesses have our breaking points, too.

As a lifelong patient with neuromyelitis optica spectrum disorder (NMOSD), I’d like to believe it takes more for me to reach my limit than it does for most people. Still, I do have a limit, and it feels monumental when I reach it. Even though we lifelong patients may focus on resilience, some things can emotionally overwhelm us and bring us to our knees.

I’ve now spent over two months battling pneumonia, which has been incredibly challenging. At the same time, I’ve been experiencing NMOSD symptoms, including numbness in my extremities and a tightening sensation around my core. These flares have been distressing.

Understandably, I’ve been constantly checking for changes in my body’s response, hoping to see some improvement. When days pass without progress, I feel panic creep in. It’s a double burden dealing with another severe illness while worrying about NMOSD, too.

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During this bout of pneumonia, I’ve been unsure about when I should seek medical attention for NMOSD symptoms. All of the possible physical scenarios can be overwhelming, especially when I’m already under such stress. I think it’s natural to question if the symptoms are a temporary response to the pneumonia or if they might persist.

Assessing whether I’m nearing my breaking point from fever or accumulated stress has been a tough call. Guidance from my family and other sources has provided a fresh and helpful perspective. In fact, my family’s suggestion that I head to the emergency room for Solu-Medrol (methylprednisolone sodium succinate for injection), though perhaps erring on the side of caution, seemed like a prudent move. In such complex situations, it’s wise to take proactive steps, especially when dealing with NMOSD and other chronic conditions.

When words hurt

I’ve also been dealing with recent weight gain because of adjustments to my NMOSD medication, which has been tough, especially because it affects how I feel in my skin. Comments about my weight, even if well-intended, can hit hard, particularly when I’m already feeling insecure. It’s tough when someone close to me, intending to be kind, inadvertently adds to those feelings; the impact of that can linger.

What people think of me does matter. It’s essential that I acknowledge my emotions about such comments and recognize that my reactions to them are OK. Nonetheless, I struggle to navigate these moments of vulnerability, and at times I’ve found myself close to my breaking point.

Poor communication

Sometimes loved ones offer their support with sincere yet difficult-to-answer questions: “What can I do for you?” “What do you need?” Since there’s no immediate way to alleviate the effects of NMOSD, frustration tends to mount for both myself and those who care about me.

The guilt I feel when loved ones express concerns about my health, particularly in my present situation of battling two illnesses, is completely understandable. Yet when I try to maintain a semblance of normalcy, it can make others think I’m feeling better or, worse, assume I might be pretending the rest of the time. These misunderstandings don’t help any of us.

My inability to express how I’m feeling can bring me close to my breaking point, too. When medical professionals ask about my struggles, I can rattle off a giant laundry list, with each issue vying for attention. Doctors naturally operate from a problem-solving perspective, but without clear solutions, I’m left feeling a mix of anger and anxiety.

It helps to be aware that I’m not alone in these situations, which are incredibly tough for all of us with chronic conditions. Remember that it’s OK to feel as you do and that finding ways to communicate effectively, even when the answers aren’t apparent, can be a step toward making things better for you and those who care about you.

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.


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