Life Moves On, But Time Stands Still
On the grief that can come with chronic illness, and the people who help us feel less alone.
I was struck by something recently, a realization maybe that I hadn't picked up on before.
Upon reflection, I kept thinking, "life moves on, but time stands still." Why was that ruminating in my mind?
We all have stories of loss, whether people, jobs, or relationships, and there is a heavy grief that comes with loss.
For people who become ill, or live with chronic illness, it's a different kind of grief.
We really don't realize how fragile our health can be, or how much we take it for granted when we have it.
But when we don't have it, life changes… there is such a myriad of emotions that comes with chronic illness.
Anger at the body that seems to be betraying you…
Grief for the life you had before you were ill…
Fear of a diagnosis, of treatments, of what is to come…
Frustration at feeling misunderstood by people in your life, because you are not the person you were, and might not be able to do what you did…
Isolation from people who mean well but make you feel less than because of your illness… Lethargy from living in a body that is not cooperating with you…
Irritation at having to fight for what you took for granted before…
Exhaustion from trying to keep up with everyone when your body just wants rest… And unfortunately, defensiveness, just to navigate a world with people who may not be understanding or considerate.
You notice that everyone moves on, the world moves on, but time and your world stand still.
You live in a moment in time, a time capsule, holding on to as much as you can from your life before you were ill. Your world does not seem to move forward with everyone else's.
You feel like you are alone, until you meet people like you…
I found amazing people who were living with similar issues to mine, zebras with rare and invisible illnesses.
In medicine, there's an old saying: when you hear hoofbeats, think horses, not zebras.
Doctors are taught to look for the common answer first. Those of us with rare conditions are the zebras, the ones who get missed because we aren't what anyone expected.
A group of zebras is called a dazzle. Honestly, that fits.
Through my fellow zebras, I've learned so much about the company we keep.
I am so grateful for the people I've met along the way since my first rare diagnosis.
They are the most amazing, kind, funny, strong, compassionate people.
They have an inner light that shines so brightly in a world that may have felt like it went dim when they were diagnosed.
They have shown me that there is another side to living with illness, one where you find your people.
One where you get to share your experiences and feel less alone in the world.
One where you feel loved and appreciated for who you are now, not forced to try to be the person you were before you became ill.
One where you can use your experience to hopefully help someone else on their own journey.
And one where your voice has value, and your experience means something to them.
One where you find your inner light again because of the people you've met.
And finally, one where, maybe just maybe, you have the honor of helping someone find their light again too.
— Rossana