It’s nearly impossible to try to explain to someone what it’s like to live with a chronic illness. You will have good days and bad. Both will appear to your friends as extreme — one night you’re out at the movies, having dinner with them, laughing, having a great time; and the next day you’re unable to get out of bed, much less take a shower. Your optimism about yourself, your life, and the world turns into cynicism overnight.
There are many ups and downs to the chronic illness rollercoaster of life, but one thing that will always be the most difficult is trying to explain the weight of the ups and downs.
Your illness will never go away and you’ve had to make peace with the unknown. You know that now is the best “better” and “there could be far worse.” You’ve had to find a way to cope with uncertainty and all of the anxiety that it brings. (If you have panic attacks that is a whole other ball game.)
Your friends will always seem to see you at your best. They don’t know that while you laughed with them yesterday you were also waiting on a phone call to tell you if you can do an inpatient intensive program — or not. They don’t know that while you crossed the room with ease today, last week you couldn’t move from your bedroom to your bathroom. They don’t know that last year you could have walked four blocks and today you can’t walk a single one. You’ve masked your illness well.
Masking a chronic illness
When you’re at a crossroads in your illness, you’re at an all time low. But, if you masked your illness so well, you are scared for yourself and those around you. You’ve made it through the ups and down before, but what if this time it appears that you are in a steep drop? What do you do when you’re struggling with your chronic illness?
The truth is, I don’t know. I’ve masked my illness as well (as I think so many of us have) – it doesn’t mean that we’re not honest about it, it just means we spare a lot of the gore from the ones we love. We state facts matter-of -factly so they can appear less than what they are.
I think the best thing you can do when you’re struggling with your illness is be open and honest — share. Share with your doctors and with your friends and your family. They might not understand. They might say things that you don’t want to hear or that come out wrong because they are hurting or they are confused by you. But the best thing you can do for yourself is just be honest. Just being honest is a huge step in advocating for your health and your selfcare. Your pain, your mental state, be honest about it all.
The people in your life are there to help you. Trust me, they want to help. You just need to tell them what you need.
Note: Cerebral Palsy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cerebral Palsy News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cerebral palsy.