The Anxiety That Comes With My NMO

Last updated: January 2023

Living with a chronic illness like NMO, I have loads of thoughts crossing my mind daily. Only those who suffer from similar conditions can understand the toll that this stress takes on me, and others with NMO.

The general NMO anxiety in my life

I worry about so many things every day. The future is incredibly unpredictable when you’re suffering from Neuromyelitis Optica Spectrum Disorder. You don’t know what could trigger a flare or an attack. Is it anxiety? An infection? Or a new lesion?

From worry to stress, to physical symptoms

A simple thought can trigger stress, causing my symptoms to worsen. Constant stress over a day trip ends up with me flaring before even leaving the house. I worry about my future. How will I finish my degree with my brain fog, speech problems, and the unpredictability of this disease? What if I end up in a hospital during my first year of law school and miss crucial classes? What will I do then?

Feeling like a burden

It’s the worst feeling when you lose your independence unwillingly, especially as quickly as it happens in some cases. With this disease, progression is rapid if we aren’t receiving the right treatment. I don’t want to burden my family, especially my parents, who have their own health problems, work full-time, and handle everything else. I don't want to burden my siblings, busy with their own lives and getting through high school. I want to rely on myself, but unfortunately, that isn’t always possible when you’re suffering from an incurable disease.

When you don't feel heard

As most of us have experienced, medical professionals quickly dismiss us if they haven’t heard of our disease or symptoms before. And they blame it on anxiety.

The stress of being perceived by able-bodied people

I come across two types of able-bodied people. One, those who are willing to understand your condition, and two, the type all of us that are chronically ill dread to come across. The ignorant type. Those who believe being unwell is our fault that we brought this illness upon ourselves. Or our illness isn’t real, and it's all in our heads. They don’t try to open their minds and understand us.

I worry that whenever I enter the hospital waiting room, I’ll encounter a medical professional like this. It's my worst nightmare because they can turn my life upside-down without even thinking about the effect it could have on my physical condition. I also worry that I’ll enter a new workplace or a university class and come across that type of person. How will I handle it?

Feeling misunderstood and lonely

The feeling of never being understood is so overwhelming. It feels like no one gets you. No one gets why you cancel last minute because the pain is too much. Or that the fatigue leaves you in bed for days. People try to relate and complain about the occasional back pain they get. Or, they say how other people have it worse. However, all you want is for someone to listen and sympathize with you.

I thought my medications were supposed to help!

The side effects of medication can be worse than the relief they’re supposed to provide you. Constantly having to worry and stress about a treatment working takes an enormous toll on my mental health. I've relied on anti-depressants to calm myself down since diagnosis. I’ve had so many bad experiences with painkillers and their side effects. I don’t want the preventative treatment I’m on to end up making things worse or not work at all.

Will I ever get better?

Then, the worst of them all: the thought of not getting better. Sometimes, life isn’t always sunshine and roses. We get hit with the most painful situations that we can’t ever get out of. That can lead you down a dark road. It’s the thought of going through a tunnel with no light at the end. That’s how it feels living with a chronic illness with no cure.

All we have left to do is to be kind. Sometimes, people need someone to listen to them, even if they can’t help them in any way.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Neuromyelitis-Optica.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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