It’s OK to Not Be OK
A chronic illness diagnosis can turn your world upside down. Especially an illness that can significantly limit your ability to do the things you love and be present with the people who matter to you. People with Myasthenia gravis have shared a lot of stories of missed friend birthdays, graduations, weddings… Here on the FindMeCure blog, we have always encouraged you to reach out and admit you’re struggling. There is no place for guilt or shame when you open up about your feelings and your challenges.
Morgan from Is Was Will Be is here to tell you that it’s perfectly, completely okay to not be okay. Go to her blog for more reassuring, life-affirming advice and perspective.
When I was diagnosed with Myasthenia Gravis, I did a lot of pretending. I pretended that nothing was wrong with me (when clearly there was). And after news of my diagnosis broke, when other people would ask how I was. I’d simply reply “I’m ok”.
But I was lying. I was NOT ok. For some reason I felt like admitting that I was not ok was a sign of weakness.
Reasons why I wouldn’t share
Admitting that I was not OK to other people would force me to admit that I wasn’t ok to myself. I was in denial my first 6 months after diagnosis. I didn’t want to accept that this was happening to me.
I felt like I was being a complainer. No one’s life is perfect. Why am I exempt? Just put on my big girl panties and dealing with it was my motto.
Admitting that I was not ok would prompt more questions that I didn’t have the answer to. If I said I’m not ok. Most people would ask “what’s wrong?” “Everything. Everything is wrong. I can’t see and my legs feel like boulders.” But that’s not the correct water cooler talk for the office.
I didn’t want to be a burden to others -physically or emotionally. Some folks are highly empathetic. So unloading my gripes about not being ok, may seriously affect them. Also, they may feel the need to “rescue” me or alter their lives for the sake of me.
I felt pitiful. So I kept it to myself.
I put on my best performance when needed and otherwise kept everything under wraps to the best of my ability.
That was maintainable for a while but trying to keep it “together” and be ok was exhausting and stressful. Since stress is a trigger for me, I assume pretending caused more symptoms to flare.
I know many people with chronic illnesses who can relate to not wanting to admit to not being ok. But I’m here to play devil’s advocate a little.
Reasons why you should share
Even if you can’t fully articulate what’s not ok, honour yourself and your body. Admit that you aren’t ok. Do some self-care to figure
Free Yourself.
- Holding on to that type of emotional baggage is draining and exhausting. I fully believe that our bodies have the ability to manifest our emotions. You don’t want to hold on to that type of bondage.
Assistance
- I resented my friends and family for not just knowing that I needed help. But they aren’t mind readers. Once I told them how I was really feeling they were willing and able to step in when I needed them to.
Self Care
- You may not have all the answers as to how exactly you’re feeling or what you’re feeling. Admitting that something is not ok is the first step to figuring it out. Practice some self-care to tap into yourself. I’m a big fan of therapy and journaling for mental and emotional self-care. Small things like doing a body scan or gentle massages can help you tune in to how the various parts of your body are feeling.
Self Validation
- Who cares if people “pity” you or think you’re weak or lazy. You know the truth. You’re a warrior on the battle lines daily. Give yourself your own kudos and don’t let the opinions weigh on your self-worth.
It’s ok to not be ok.