Hi, I’m Des, and I’ve been given the opportunity to guest write a few pieces. I’m the mother of a child with a chronic autoimmune disorder, a teacher, currently of special needs children, and a military wife. All of these things have given me the opportunity to come into contact with scores of people who all have something that they struggle with. I am a natural nurturer, listener, and often find myself in the role of advisor. I want to thank MCASMommy for the opportunity to share some thoughts.
“Mom, I hate this, I hate my pills, I hate when I can’t eat what I want, I hate that all of my teachers know this embarrassing thing about me, I hate it. I feel like I should get over it, it’s actually been a good week, I feel great but I’m not okay.”
How many of you have said something like that to yourself or someone else? “I’m not okay.” Then that person starts to list all of the reasons why you should be okay, or grateful, or just suck it up. You are frusterated, in pain, tired down deep to the center of your being, and they tell you in essence to get over it. Then on top of every physical or emotional struggle you are having you begin to feel this pressure to stop being in pain. Stop talking about things that make others uncomfortable, stop burdening them with your issues, stop asking for help.
I know that as the observer of the struggles I can never really understand how hard it is to live day in and day out with something hanging over your head. I will never really understand how hard it is to go to bed each night and wake up each morning and know that “this” is your life, the medication, the emotional toll, the limitations on daiy activity. What I do know is that it is okay to not be okay with it. It is okay to allow yourself to share those struggles with someone, and it it okay to have days where you are not okay.
We live in a world ruled by tweets, insta stories and filters. The aura of perfection is thrust upon us from every direction. Advice about how to be better, and okay-er, and never have a bad day is rampant. This over connectedness to the veneer of perfection can make even the healthiest of us feel not okay, how much more does that apply to the people who struggle with physical and mental illness?
Giving my daughter explicit verbal permission to tell me when she is not okay has been a powerful thing for her and for me. Allowing her the space to feel what she is feeling, and to air them to me when she is feeling them has been an amazing step for us in this journey. Teenage girls struggle to be honest with themselves and their parents in general, and even more so when they have larger issues to deal with, so I feel like taking the time to tell her that she is not only allowed to tell me when things are bad, but is encouraged to is important.
For those of you who are reading this as friends and family of those who deal with chronic medical issues and trauma I want you to read this carefully, think about it seriously, and then act on it lovingly. Remember that it is okay for the person dealing with these issues to be not okay, they are allowed to be frustrated, defeated, and angry sometimes. Your job is to support them in any of their feelings, don’t make them feel like they are dramatic, depressed, or too much to handle. If you feel able to be truly supportive of their journey no matter what they are feeling that day, then tell them that. You need to give them explicit permission to have times when they are not okay and to share those times with you. Then, most importantly, you need to follow through. Listen, don’t try to fix it, just be there for them when they need to complain, whine, and generally not be okay. By doing this you will help them have more days when they are okay. I know it sounds backwards, but I promise being truly supportive of the bad days, will help increase the good days.
*if you don’t feel like you have someone in real life to talk to, please reach out online, I have found some of my best support in the form of online relationships. Not everything on social media is bad.