My Experience

Chronic Illness Grief and Being Chosen

The other day I was struggling with chronic illness grief. It’s something I’ve dealt with since getting sick. Everyone goes through it when they get sick, it just comes with different labels. I was experiencing loss. Loss of freedom, loss of innocence, and loss of who I used to be. As we change over time, we will always experience emotions towards who we were before we grew. Whether they’re happy, sad, angry, or all of the above is completely unique to you. During this grief, I started thinking about how spontaneous I could be before. Not that spontaneity is really my thing but I used to be able to do things on a whim. Now, even minor trips have to come with relative planning. Where is the nearest hospital, do I have my medications, and is Crush ready?

This isn’t all to say that I’m not happy now. I’m very grateful for how my life has turned out. I’m growing in ways I never imagined possible. I believe I’m becoming who I’m meant to be. I’m saying that some things are no longer my choice. Once that choice is taken from you, you feel stripped of the experience you could have had. That’s part of life.

Chronic illness is full of doctors appointments. It’s symptom management, planning for energy lows, and a million other things. It takes work to have a life with chronic illness. It’s work I’m happy to do but work non the less. I wanted to write this because acknowledging grief is important. I chose to ignore sadness for a very long time. Then I would dip into lows and feel like I was drowning. What I’ve learned is that emotions will always be there. It’s your choice whether you indulge them but if you ignore them they only grow and gain more power. So I’m choosing to see the hurt and grief. I want to acknowledge how hard it is to feel like a part of me is gone. A part of the life that I always imagined having is no longer there and likely I’ll never get it back. That’s really hard. It’s filled with anger, sadness, and fear. Fear that I won’t be fulfilled in a life with chronic illness. For me, that fear is driven by OCD. I want to ensure that 100% of the time I will be happy but as we all know, that’s not possible.

On the flip side of that, I want to be chosen. What do I mean by that? I mean that in friendships and any relationships, I want to be chosen for who I am with chronic illness. I love who I have become. I am strong and resilient. I believe that I have a beautiful outlook on life and a bright future ahead of me. I don’t know if I’d be half the person I am without chronic illness. I want to be chosen because of it, not in spite of it.

When you live with chronic illness, you naturally face discrimination. People will be very blatant about rejecting you because of your illness. They’re quick to say it’s inconvenient or that it’s fake because they can’t see it. Not all people are like this, but there’s a fair amount of the population that is riddled with ableism. I would like to think I wasn’t like that before I got sick but it’s possible I was. It’s easy to see people for what their circumstances are and not their personality. That’s true universally, not just chronic illness.

All of this to say, I am better now than I was before. Mentally speaking, I am more open minded, compassionate, and caring. I feel humbled by my experiences and yet more confident in myself. Chronic Illness has given me an odd gift. I don’t know if I would choose this experience but I’m grateful for what it’s given me.

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