The Concept Of Forever And Chronic Illness.
First-person NarrativesArticle28 Jul, 2021

The Concept Of Forever And Chronic Illness.

Sam tells us about her concept of forever with a chronic illness.

Trigger warning - Medical Ableism, Abuse, Grief.

You rarely think of forever before you get diagnosed with a chronic illness. Forever seems like a concept that flows through time, that you live through rather than spend time thinking about. For me, before my first diagnosis, forever was just another word denoting time - time which I, as a teenager, seemed to have a lot of. Forever was something to look forward to, not something to dread.

That changed when I entered a rheumatologist's clinic with swollen fingers. When he examined me and explained that my illness would last 'forever'. That we could possibly manage it, but could never completely eliminate it. That I would have to live with it 'forever'.

All of a sudden in that moment, my life looked very different. My life was no longer filled with possibilities, where forever was something to look forward to. Suddenly, it became something to dread - something that made me angry, sad and confused. Would I really carry this burden all my life? And how much would my forever change because of it?

The future seems really scary when doctors repeatedly tell you that it will be full of pain. How do you reconcile your life with this declaration? My forever changed in one moment - and now I was expected to be more careful. Expected to choose a job that was not harsh on my body. Expected to stay in a place where it did not rain or snow because of how badly it would trigger me. Expected to think about every event in my life from the lens of my newly broken body.

Forever seemed full of questions now - Would I sustain in a job? Would I ever find someone to love me completely? Would I live long enough to see my illness be better understood, and possibly cured? Was all this too much to hope for? As a 16 year old girl, while the world suddenly told me my entire life would look different, no one really stopped and answered these questions about what it would look like.

Grief is long, hard and painful. But it is even worse when you grieve something you lost before you could even have it. I lost a future I had not even thought of - simply because it always felt like something I would certainly live.

But now, this certainty was replaced by a question mark. Now, my forever had to have medicine boxes and injections, and physiotherapy - but these were the only certains in it. Love, happiness, and a fulfilled life were no longer certains.

Like all other types of grief, this one also had to be carried by me, carried along with my diagnoses as I went from one doctor's room to another. I lacked the language to tell any one how I felt about my body, and my life - how I felt betrayed, hurt and hopeless.

A huge time has passed since then - more than 5 years. While you always carry grief, you also make peace with it eventually. For me, this peace still changes everyday. On some days, I feel angry, on others, I feel sad, and on few, I feel peaceful. With support, therapy, community and love, on some days, I thrive. My forever may look much different now, and I still grieve what I lost, but I slowly realise that my body doesn't deserve anger for being the way it is. It deserves love and care and support. I'm still learning that it never betrayed me at all - in fact, in all this grief, it was the only one that suffered with me, like I did. As romanticised as that may sound, that makes forever palatable too - knowing that love is a choice I can make for myself.

Want to be informed when this author publishes the next article?

Save, embed, share, report
0comments

Explore more channels?Show all

Feminist Gupshup Aur Disabled Sex!
First-person Narratives
Falling In Love In An Able-Bodied World
The Crip Gang
Disability Pride!
Let's Make Ableism Seen!
Power In My Disability
A Queer Disabled Crip-Mas!

More from this channel

Select between trending, latest and important content.