The Grief That Comes Naturally When Your Life Is Changed by Illness

I remember attending my first counseling session after my stoma surgery and being told they couldn’t provide the right form of counseling via the NHS because I needed a form of grief counseling.

I never considered I was experiencing a form of grief. I had always linked that to losing a loved one, but if you really think about it, it makes perfect sense.

At the time I had lost the health I once had and parts of my body I thought we had to live with (my colon had been removed due to acute severe ulcerative colitis). And I’m still grieving today.

I regularly feel guilty for not being able to do the things I used to (even simple tasks around the house) and this makes me feel like a burden to those around me. People have always taken health for granted until it’s gone and it’s not in our control to change.

Grieving is something that becomes regular for someone living with a chronic illness/disability. As much as we try not to think about life in the past, it’s only natural to do this. Especially when you’ve lost so much freedom.

I also try my hardest not to compare my life to others because everyone’s journey is different. It’s one of the reasons I don’t scroll posts on social media because as much as I try, it’s impossible not to. I love that people are living a better life after their surgeries/challenges they’ve faced, but it makes me question why my outcome was different. Why my story can’t have a positive ending.

For me personally, I’ve always been extremely ambitious, which is probably why I now run Making the Invisible Visible and take part in pageants. It gives me a sense of purpose to give back to others.

I miss working and find it hard seeing others moan about going to work when I don’t have that privilege anymore. I regularly feel trapped in my own home. I lost everything I had worked for.

At the age of 19 my banking career began. I moved into a rented house with my ex-partner and knew my two part-time jobs wouldn’t be enough to cover our bills. So I decided to start my full-time career early while completing the final seven months of my college course. It was time and energy-consuming, but I didn’t want to give up.

After finishing my full-time course, all with distinctions, I started to focus on career progression and took on whatever overtime was available to save for a house deposit. I worked a whole month straight at one point (I don’t know how). It all paid off, and at the age of 22 (three years later), I became a manager in my department and bought my first home: achieving two of my dreams in life.

My old relationship fell apart for a bunch of reasons, but he definitely struggled to accept my success.

I’m now with the love of my life who has stood by my side through the toughest challenges in my life. Just before my 25th birthday, my health started to take a turn for the worse and I was fighting for my life a few months later. We were in the process of buying our forever family home and planning our wedding day. I had to sign our solicitor paperwork from my hospital bed as we were about to lose the house. But we achieved those dreams of ours. We moved in a month after my second emergency surgery and our wedding went ahead the following year. My third most invasive surgery was even held off for this.

One dream we’ve had to accept may not ever happen is our plans for children. It’s possible my surgeries could have impacted my fertility. I’ve had friends offer to be surrogates and talk about adoption, but that’s not even our biggest hurdle right now. Realistically, we are unable to try for children.

I can’t get out of bed most days or when I can, I struggle to do basic tasks.
My husband and mom have become my carers. So I have to accept that I wouldn’t be able to raise a child while my husband provides for us. We wouldn’t be able to focus on taking care children, which hurts to say, but it’s true.

I held onto hope that I’d return to better health after my recovery, but we’re coming up to five years, and in all honestly it’s hard to stay hopeful — you have to be realistic too.

I’ve had to come to terms with life being different to what it once was/everything I envisioned it would be.

I have to accept that this is out of my control and no matter how much I try, it won’t change the outcome.

I have to learn that working can actually have a further impact on my health, which really isn’t worth it.

Some of us also have to comes to terms with drastic changes to our bodies, while society doesn’t deem us as beautiful.

I have to fight past feeling alone or unworthy due to the lack of representation in media.

I would like to say this grief ends, but I’m unsure if it does. Come back to me in the future on this one.

What I do know is that this grief is perfectly normal.