Life Lessons from a Spoonie

You learn a lot about yourself and the world when you get diagnosed with a chronic illness. As someone who was a relatively healthy child, I never once thought that my life could change so drastically. In the three years since my formal diagnosis, there have been a lot of ups and downs and I know that the roller coaster that is chronic illness is going to carry on for the rest of my life.

I am not obligated to do everything that a healthy person does. Put simply, I can’t. That is something that I’m still learning: I still push my body beyond what it is capable of, because I don’t want to be viewed as different. I can’t work a 40 hour week, go out in the evenings and then have a packed weekend. Hell, right now I can’t even get dressed or leave the house. Working is important to me, but my health is important too. I’m allowed to know my limits. And I’m allowed to change them day by day.

Having a diagnosis of a chronic illness does not automatically make me an inspiration. I really struggle when people tell me that I’m brave or inspiring, I don’t see things like that. I have two choices: give up and lie in a pit of misery for the rest of my life, or pick myself up and carry on as much as possible. Sure, it’s hard, but what choice do I have? Feeling sorry for myself is only going to make me feel worse.

The reality of chronic illness is scary. It’s scary because people don’t understand. But I will not ever hide my illnesses to make other people feel comfortable. I do, however, know what is appropriate to talk about and with whom. I’m not going to drop into casual conversation that my nose constantly feels like it’s burning because of how sick I’ve been and that I’m scared to blow it, in case it caused yet another nose bleed. Spoonie friends are more likely to understand that. I’m open and honest about things, but I know that having a verbal filter is important too.

I am allowed to have bad days. I’m allowed to have bad weeks. I’m allowed to have bad months. I’m allowed to cry. Life can be really tough, unpredictable, scary and testing. I’m allowed to morn my “old” life and feel jealous of people who are healthy and don’t need to plan their lives around medical appointments and consider whether they are going to overspend on energy. If I do overdo it, I will not be ashamed about staying in bed and only getting up to go to the bathroom or get a drink. When my body is crying out of sleep, there’s no point ignoring that.

And I’m allowed to celebrate the little things, such as getting dressed and not living in pyjamas (although pyjamas are good) or going to the supermarket or replying to a backlog of emails.

It is not my fault that people won’t always understand. Unless you’ve experienced something, it’s very hard to fully understand what a person might be going through. Empathy goes a long way, but please don’t be patronising. Being ill hasn’t altered my intelligence. Seeing people unwell is difficult, I fully get that. But being unwell is a lot more difficult and having people walk away from friendships or relationships makes being unwell a whole lot harder. I’m still part of the world, sometimes I’m unable to join in and it’s isolating. A simple text saying “how are you?” is enough to make someone’s day.

I did not choose to be ill. No one chooses it. It is not my fault, it isn’t anyone’s fault. I didn’t wake up one day and think “hey being sick with no cure sounds like fun, I’m going to try that and see what happens…” This is not a lifestyle choice. This is my reality and the reality of so many other people.

empathycards

 

I will not apologise for something that is out of my control.

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