You get a lot of advice when you’re chronically ill. Some of it good, some of it confusing, some of it frustrating. And, to be honest, I’m still trying to figure this one out. In my mind, I toss this in with “think positively” and “remember there are people who have it worse than you.” It’s something that initially sounds like constructive advice, but by the time you’re through thinking about it you’re left feeling frustrated and lost. Why? Because it’s woefully incomplete.
The truth is that, if you have a serious chronic illness, it’s going to define you. If this illness is strong enough to disable you from a “normal” life, it’s time to accept that this is part of your existence right now. It’s going to be a crucial aspect of your life that refuses to be ignored. We’re not talking small life details here, we’re talking things you tell someone before you even start dating them.
Why? Because this affects the way that you live your life and downplaying its validity belittles the full reality of what you awake each morning to face. It leaves you feeling worthless for being so exhausted from fighting; because why would you be exhausted from fighting a battle that isn’t difficult? How can you be so weary from something that isn’t a big deal? Why is it such a struggle to thrive? Why are you the only one failing so miserably at normal, everyday tasks?
Do you understand the mentality that this promotes? It encourages a downward spiral of loneliness, frustration, and self-hate. Suddenly the advice that sounded so good initially has merely added to the greatest fears and struggles you face. It makes you feel guilty when you talk about your illness. It makes you think twice before devoting your limited energy to raising awareness.
However, I also cannot say that this admonition is entirely false. Your illness shouldn’t be the defining factor of your identity. Your illness isn’t the only part of you and it definitely isn’t the most important part of you.
You can’t replace your name with your illness. It doesn’t have to be the first thing you say when someone introduces you. It shouldn’t be. It is important to be able to talk about other things and to recognize your own identity apart from your illness.
But you know what else?
It’s okay to find comfort in putting your feelings into words.
It’s okay to speak about your illness enough so that other people know they’re not alone and that you’re someone they can talk to when they’re going through the same things.
It’s okay to advocate for people who fear speaking up for themselves.
It’s okay to help your loved ones understand what you’re going through by being honest.
And it’s okay to just have really terrible days where you need to vent and cry and be hugged without being made to feel guilty for feeling the pain that you’re enduring.