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Why Talking About My Reality With Illness Isn't 'Negativity'

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People often mistake me speaking about my daily reality as negativity and pessimism.

When I’m trying to come to terms with my illness it is actually really unhelpful to sugar coat things or pretend things are better than they are. Just because I’m admitting the severity of my illness to myself does not mean I am am admitting defeat.

Additionally, choosing to use a mobility aid because I’m aware of my physical limitations allows me to do more than I otherwise would. Sometimes I can walk fine and even jump and dance. Other days I need a little help from a walker or cane. And some plans require a wheelchair because otherwise my only option is to just not participate because of risk factors.

When I make these decisions and say these things it’s because I’m deciding to take ownership of what my body can and cannot do, accepting it and then choosing to participate in life regardless of it. Because the reality is that I can choose to call a spade a spade and use the tools that allow me to continue to do the activities I need and want to do,  or I can choose to lay in bed, depressed and hopeless, or risk injury trying to participate without the proper tools.

Finally, I want to remind everyone that most of us with invisible illnesses and illnesses that fluctuate in level of ability have to work really hard to admit and accept that we need help, and that it’s OK to ask for and use it. By the time I’ve asked for assistance or agreed to use a mobility device, it’s safe to assume I’ve already prolonged it as long as I could. You can assume I’ve already fought with self-doubt saying that I shouldn’t need the help and therefore have tried every other option in order to not use it. When someone says, “Are you sure you need that today?” (or something along those lines), regardless of their good intentions, I immediately feel like that voice in my head that tells me I’m overreacting and my pain is invalid is correct. It will undo all the hard work I did to reach the point of acceptance and self-awareness.

Be kind to each other. Listen to what people say they need and then validate that.

In the end you know what you need, and don’t let anyone make you feel like you don’t deserve it.

Getty image by Victor Tongdee.

Originally published: March 15, 2019
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