I Feel Alone with a Rare Disease

Living with a rare disease like neuromyelitis optica (NMO) has put me in a position to feel alone. When I was first diagnosed with a rare disease, I never knew what true loneliness was. I was forced to be friends with myself. A lot of people find that the hardest. To love and know yourself.

But when that’s all you have, the inevitable consequences of loneliness has a huge impact on mental health.

I feel alone. That’s a phrase anyone can relate to. Do you ever get the feeling you’re in a crowded room and that’s when you feel the most alone?

Needing connection

There’s a strong need for human connection and interaction, but also a strong urge to just be alone. Mental health awareness is important, and we should talk about it.

There’s so much going on in the world, in our families, love and personal lives. But let’s address the fact that so many of the world population feels alone.

We are socialized to internalize inner conflict. We as a society often shun mental health disorders. When in reality, those that do that most shunning may feel the greatest mental turmoil.

Rare disease changes your perspective

The reason I feel alone is the lack of connection on a deeper and more emotional level. I think many of us can agree. Perspective changes after we get diagnosed with a rare disease. And sometimes the conversations we use to engage aren't engaging anymore.

I think a lot of my loneliness stems from the fact I couldn’t have a stimulating conversation with anyone because everything seems so bland. There was no substance to any conversation I was having.

It feels like we are all so dissociated from the realities of the human experience, that we put ourselves into a bubble - separate from everything.

Escape from reality

But then we have to ask ourselves why do we disassociate? Especially in the beginning with NMO, you can’t and won’t accept what is happening to you. So your brain protects you in a way by mentally checking out of the reality that is around us.

We all go through life experiences that shape the way we act and feel. If only we could take the time to understand others' life experiences, we might not feel as much disconnect around other humans.

NMO is hard to understand

Having a rare disease with no one around you that has one, is isolating in itself. That comes with it’s own set of challenges such as, explaining your illness until you are blue in the face. And people still don’t fully understand.

Sometimes you just want people to take a magnifying glass look in your body and see all the pain that you have. Sometimes you just want somebody to sit down and genuinely listen. And sometimes you don’t want to say anything at all.

I think something that has helped my loneliness the absolute most is connecting with those around me that have the same disease or another rare disease.

If you feel lonely, just know you’re not alone.