The loneliness of being ill

I am many things, many roles, many aspects. One of them is – I am brain tumour patient.

I was first diagnosed more than 8 years ago. Since then I had different treatments, remissions, recurrences, getting worse and getting better… And now, facing the third time, I’m more tired than ever. And more lonely.

Having such an illness is hard. Maybe the hardest part is that it is a damn lonely thing to face. Even if you have people near you.

People close to patients with severe illnesses face it in their own way. It is the truth: such conditions do not affect just the patient, they affect their families as well, just in a slightly different way. I am a mother, a daughter, a wife, a sister too, and I can understand that their pain is different, but in no way less signifiant than mine. Just different.

People face difficult situations in different ways. Some close. Some yell. Some fight. Some deny. Some research. Some lay down. Some get up and do whatever they can. In my eyes ther is no right or wrong way – everyone does what they can. And it is all right. It is all right to give up, and it is all right not to give up. It is all right to cry, and it is all right to stay positive and believe all will be well. The reality is how we perceive it.

However, when it becomes hard, understanding it does not make it easier to (not) feel what you do. Either you cannot burden those who face their own pain with yours too (how could you?!), or there is no-one who would listen at all. Because the reality of the one who is sick, who is in pain, who faces it all, is not the reality anyone would want to know. Some people don’t want to hear it. Some say it’s not bad. Some say you only have to stay positive. Some want to share their story. All you need is someone to listen.

Yes, it is lonely. There are days when all you feel is the need to share, to tell, to say it, to let it out.

You must face yet another pain alone.

Alenka H., 2022

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