Tuesday, 14 September 2021

I didn't realise my incurable illness hurts my loved ones as much as it does me

Dealing with illness daily is draining and for our loved ones, watching us suffer is also emotionally knackering. Therefore, working together to care for one another's emotions is how you can help each other through it - as I learnt the hard way.

Being diagnosed with Inflammatory bowel disease (IBD) completely threw me. I had no idea how I would process it, and all I thought about was how it affected me.

"Oh what, so the people around me are finding it hard too?" I thought, but I didn't really care as I was the one who was dealing with it, not them.

Illness in any form has a way of pulling the rug right from underneath you – for me, the chronic disease has just become a part of life now.

I am still horrified when I must explain it to someone new, and I cannot bear it when a family member invites the information for me.

Then it hit me. My fiancé, Stephen and my Mum Amanda had been holding my hand the entire time. It had changed their life in a way too.

For the first time, I sat down and asked them to open up about how they felt about my diagnosis, treatment, saddest moment and their top tips for coping with a loved one being unwell so you can do the same with your loved ones.

Compared to most, my diagnosis was quick, but I asked my husband-to-be Stephen how it made him feel.

He said: "For me, as weird as this sounds, it was kind of a relief.

"The months of not knowing what was going on, waiting for various results, trips to and from the hospital took its toll on all of us, but the worst part is I could offer little comfort to you.

"None of us knew the extent of what was going on and all sorts of different things were being thrown about.

"There were so many different potential causes from Food Poisoning all the way up to Cancer, and it was an unstable time.

"When we were finally told what it was, I was able to look it up myself and work out the ways to help you."

My Mum said: "The scariest part for me was not knowing too.

"We were hoping for the best but preparing for the worst. All you can do is hope that things will turn out positive in the end and that whatever you are dealing with is treatable.

"When I found out it was IBD, I didn't know what to think. I had heard of it, but when they told me it wasn't curable, my heart sunk.

"You will do anything in your life to protect your children, but when it is something like this, you can't just take it away. She was only 24 when diagnosed."

Analysing what they said of my condition made me realise I had never thought of it like that.

I was so focused on how ill I felt but that I needed to get better. I just wanted to know what was wrong with me. I hadn't even thought what it would mean for me, let alone how it would affect others.

After the diagnosis comes the treatment.

"I spent hours online," said my Mum, "I was looking up treatment plans and all the things that the doctors and specialists had told me. I was able to find a lot of the answers to questions I thought maybe silly to ask on the Crohn's and Colitis Website."

She continued: "I didn't know what to think. Everyone's journey had been so different, and it felt like this had come out of nowhere. I was fearful of how Jess body would react based on past problems."

On the most harrowing moment seeing her daughter diagnosed, she said: "The most challenging moment for me was the day Jess went for a checkup and looked so unwell.

"She had battled through all the treatments they had given to her and done it without a fuss. We felt like we had come so far, and then they told you that you were likely to need a Colostomy bag.

"It was a routine appointment that turned completely on its head. We were suddenly talking about the need for life-altering operations, and everything seemed to be moving so quickly it was all a blur!"

Enjoying this article and intrigued to read more like it? Check out:

- My Irritable Bowel Disease nearly saw me give up on love, here's why you shouldn't

- My chronic illness wreaks havoc on my self-development journey, here's how I changed my mindset

On his, Stephen said: "The hardest part of treatment for me is when it stops or just isn't working.

"You are watching someone you love do everything they can and watching them getting weaker and weaker, and nothing seems to work.

"The research is saying it should, but then Jess didn't respond the way that the professionals thought she would.

"All I wanted to do was fix it. The saddest moment for me was New Year's Eve.

"We had got all dressed up, and we were in our new home together watching the countdown. You started 2021 in the toilet crying because you were in so much pain, and you felt like you had let me down. Honestly, I felt my heartbreak. All I could do was hold you."

So I asked them how do they cope? As it made me realise I wouldn't want to see either of them go through IBD.

My Mum said: "You just become emotionally immune to the situation, to begin with, which is not healthy.

"It's almost like you go through a grieving process. So, therefore, it is essential to take time for yourself and support yourself as much as you can.

"I have said many times that I would not be able to go through what Jess went through and carried on the way she has."

Amanda continued: "My best piece of advice is to get support. If you think you need it and are struggling, you have every right to feel that way and not lose hope.

"If people get annoyed with your positivity but the person suffering is feeding off it, then keep going. If you are close enough to them, you know what they need, but respect their decisions too."

Stephen said: "You try your best, laugh when you laugh and support when you cry, but it isn't easy.

"The wake-up call for me was when we moved in together because you couldn't hide how ill you were on the bad days and fake a smile over the phone because I was sat with you."

On his advice to help a partner suffering, it's communication.

He said: "The best piece of advice I could give to anyone is to talk to the person suffering see their side and their perspective.

"Respect their boundaries and just be there as much as you can."

Having this conversation with my family was much needed. It really opened my eyes to how my illness affected them as well and the way they feel.

Coping with any illness is hard, but the people who love you are suffering too, and it is essential not to forget that.

Think how you would feel if the situation was reversed, be as open and honest as you can and remember to keep them in the loop.

Never forget that if you need help, ask for it.

Life is not guaranteed, and that is a tricky thing to get your head around. Bad things happen to good people. You are not alone, and with good people around you, anything is possible.

To patients and their loved ones, allow others to help, find quiet moments for reflection alone, and connect with others.

If you feel distressed or overwhelmed, reach out and talk to someone you trust or look up support groups online, there is always someone willing to listen.

Written by Jessica Murray.


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