How To Be Visible, With An Invisible Illness

“But you look so healthy!”

                                                      “But you’re so young!”

                                                                                                       “You don’t even look sick.”

I’ve heard each of those statements more times than I can count since being diagnosed with an invisible illness. And though I’m happy I look healthy (and young!) these comments can have adverse effects.

People with invisible illnesses have a hard enough time navigating insecurities, constant unknowns and everyday activities, without feeling like they have to validate their disease.

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I know staying positive during those moments, bad days, weeks, or sometimes months is hard. Really hard. And I don’t know about you, but sometimes all I want to do is scream how much it sucks. But as important as doing that can be, finding a way to keep a positive and healthy mindset is crucial to getting through the ups-and-downs you’re likely to face.

Which is why I’ve rounded up the top three things I’ve learned (and am still learning) on how to stay positive while living with an invisible illness.

1)     Be honest

As I mentioned in my article last month, I hid my autoimmune disease for years and because of that, whenever I was going through a bad period, I only had my immediate family to turn to for support. I didn’t feel I could open up to my friends or colleagues without sounding like I was complaining. I was afraid if I talked about the awful night I had or that I couldn’t come to a meeting, it would sound like I was making excuses or couldn’t handle what was being thrown at me. But, over the years, what I’ve come to find is the only way to get through it all and not completely lose your mind is, to be honest about what you’re going through. The more I expressed how I was feeling, the less isolated I began to feel. People will surprise you with their empathy and understanding if you let them.

2)     Saying no is a superpower

If you ever want a crash course in prioritization and time management, get a chronic illness. When your energy and focus are geared towards getting better physically or mentally, you don’t have a lot to spare. Learning and accepting what you can realistically take on, and who or what to give your energy to becomes a necessary life skill. Along with understanding how to trust your own judgment and not feel guilty about saying no.

 3)     Practice self-care

I know a lot of us probably roll our eyes when we hear the term self-care since it’s become such a buzzword. I know I do. But if you strip it down, it’s simply prioritizing your needs in order to live a happier, healthier life. For people with an invisible illness that can be especially hard since we constantly feel like we’re missing out or letting people down, so to take time to just focus on our wellbeing is daunting, but it doesn’t have to be.

Self-care won’t look the same for everyone and it shouldn’t. For me, it’s making sure I go to at least 2-3 yoga classes a week and get outside for 30 minutes a day. It can also be listening to my body when I think I should go do this or that, but what it really needs is rest; putting my phone away half an hour before bed, and making sure I always get 8 hours of sleep.  

Regardless of the type of self-care routine you practice, as long as you learn not to ignore key signals from your body, you’re making progress. Ignorance is bliss but it only lasts so long.

Bottom line is that there are going to really crappy times and there are going to be some amazing ones but what matters is how you handle them.