How to Offer Help to a Loved One With NMO

Columnist Jennifer van Amerom explains what's helpful — and what isn't

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by Jennifer van Amerom |

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When I first became sick with neuromyelitis optica (NMO), people often told me how sorry they were. I believe they genuinely meant it, but it’s always an uncomfortable and awkward conversation for both parties.

As the patient, I never want people to feel sad, so my natural response is to show bravery and comfort them. “I’ll be OK,” I respond with a practiced smile.

In truth, I am terrified of this disease. I have been since my first major attack. There’s no easy way to acknowledge this, so instead, I try to stay positive and take it one day at a time. Others around me also struggle to say how they truly feel.

When someone we care about gets this sick, we often feel helpless. No one really knows what to say, how to react, or what to do.

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It’s what people tend to say next, though, that really makes me cringe.

“Let me know if I can help with anything.”

Here’s the thing: Patients already feel a mix of emotions, one of which may be immense guilt for inconveniencing everyone around us. Then we must grapple with the harsh truth that our illness will be painful, difficult, and life-changing. A lot of patients struggle with these feelings and internalize them, leading to stress and poor mental health. The last thing many of us want to do is ask for help.

This is amplified every time we deal with yet another attack. I’ve heard from other patients that the people around them don’t understand NMO, so they roll their eyes and complain. People say things like, “[insert name] is always sick,” behind the patient’s back — as if we can control our bodies and time attacks between our social gatherings.

Over the years, my social circle, which includes both friends and family, has gotten smaller. This is by my own design. I hate feeling vulnerable. I hate canceling on people last minute, and I hate explaining what it’s like to live with NMO. It’s incredibly depressing to keep talking about the disease. I celebrate days that are uneventful.

How can loved ones show support?

Instead of telling a patient to ask for help when they need it, just offer it up. Drop off some meals. Take their kids out so the patient can rest. Take their spouse out so they can talk freely about how they feel. Visit and tidy up their home. Attend a doctor’s appointment with them so they don’t have to go alone.

It’s much easier to decline help than to ask for it.

I get that life goes on — for both patients facing a new reality and their friends and family members. Life can get busy, and it’s tough to fit in supporting a loved one. But if there’s truly no capacity, I believe it’s selfish to put the onerous task of asking for help onto the patient. Instead, stop at “I’m sorry you’re dealing with this.” That’s a lot more honest than an empty offer of help.

In a world of “me,” if we really want it to be more about “we,” then there needs to be more follow-through on helping others.

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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