Finding the Courage to Be Honest When I'm Not Feeling 'Fine'


I am slowly stopping saying I’m fine when I am asked how I am doing. It is scary. In our society and in my life most people don’t want to hear how I am really doing – at least that’s what my mind tells me. It takes courage to be honest and tell someone how you are really doing. However, I have found it gives the other person permission to share how they are doing.

So today, I am in a lot of pain. I am starting a new medication on Tuesday. It’s an IV infusion. It is categorized as chemotherapy and it is supposed to stop the progression of my autoimmune disease. This will be the third biologic I have tried among lots of other medications. I want to be hopeful but don’t want to get my hopes up because of the other failed medication and procedures. It is a difficult place to be in. I am scared. Really scared.

I realized the other day I am scared all the time. I project in the future and wonder how living with this chronic illness will affect me day after day, year after year. I get stuck in the past. I get depressed about the present. I care about what others think too much. My life isn’t perfect and this journey is messy. It is difficult to put into words sometimes the depth of pain and fear I go through day to day. I do have a good support system which really helps. But chronic illness is lonely. Although I know it’s OK to not be OK (10 years of therapy has taught me that), I feel this need to still please others, to let them think I am OK when inside I am not.

For the holidays, I am out of town and we are having family over. It feels like more pressure to act like everything’s fine. I have a mentor that always asks me, “If you had all the courage in the world, what would you do?”

For today I would tell someone how I am really doing. I am hurting. I am scared. I am tired of being in pain and being a guinea pig for medications. I worry about my future. I worry if I will have children one day which has always been my dream. I worry if I will be able to take care of these children.

It is OK to be scared. It is OK to not be perfect. I find that when I voice my true feelings and expose my true self to others, it helps me feel less alone. Often how people respond is not how I imagine they would respond. It takes courage and vulnerability to be our true selves. So for today, I am not fine. I am not perfect. And it is more than OK.

We want to hear your story. Become a Mighty contributor here.

Photo via samiola on Getty Images


Find this story helpful? Share it with someone you care about.


Related to Ankylosing Spondylitis

Young woman traveler in hat and scarf hold map in hand. Boho style

What It's Like to Live With an Incurable Illness

I remember the day I was diagnosed. It had been a year of going from doctor to doctor trying to find answers for why I was in extreme pain. Some doctors made it seem like it was all in my head. I was starting to feel like I was losing my mind. This new doctor [...]
woman wearing a christmas sweater and holding a mug and a cookie

What I've Learned About the Holidays Since My Chronic Illness Diagnosis

Holidays are difficult for almost anyone, especially if you have a chronic illness. While time with families can be a joyous occasion, to those with chronic illnesses it can be a time when expectations are placed on us to act like our old “healthy selves.” There are pressures to go out and do things with [...]
two canes leaning against the wall

When Illness Moves in Like an Uninvited Houseguest

The uninvited houseguest. For anyone dealing with chronic pain and/or chronic illness, you know about this. My houseguest has been around since September 2007. The houseguest decided to pounce into my home (my body) after I had my gallbladder removed. The houseguest was not friendly. Never really has been. And it has shown up in [...]
disability parking space

Struggling to Decide Whether or Not I Should Park in a Disability Space

This has often been a great debate of mine since I got the thing years ago. To use or not to use… That is the question… I often find myself staring at this ominous piece of blue plastic in my purse like a curse. Once upon a time, I would have given anything to have [...]