By Jessica Logan

GUILT is a feeling that many of those living with a chronic illness or disability feel on a daily basis.

It can be something that weighs heavily on us because of what we’ve had to let go, what we dream of doing, simple tasks we cannot do, what we see others achieving and so much more.

Not only do we feel guilt towards ourselves, but especially for those that have supported us on our journey. We feel we owe them everything, but we can’t give them what they truly deserve. Instead, we feel strong feelings of guilt for making them suffer too.

Although it’s out of our control and a result of our illness or disability, we are quick to blame ourselves and feel they would be better without us.

This is something I’m personally working on with my counselor to help me find acceptance.

A lot of my guilt is aimed at:

Not giving my husband the chance to become a father

Not giving my parents another grandchild

Not working and my husband having the responsibility and pressure to bring in an income so we can survive

Not having the energy or finances to travel the world

Not having the energy or being well enough to enjoy quality time together

My husband being on his own while I sleep all day or having to look after me when he’s not well

Not having the energy or being well enough to walk the dogs

Not being able to travel far when I have people supporting me in different locations or needing my husband to drive me places.

Not being able to drive forty minutes just to see my friend for a few hours

Having others run my projects if I’m too unwell

Canceling on plans, missing important gatherings, leaving early or zoning out

Financial loss for canceling plans (like if we buy tickets to an event ahead of time and I cannot go.)

Having a good health day the day after I canceled something

Taking my frustration out on those around me

Burdening others with my feelings if I’m down

Not being able to support others mentally as much as I would like to

Not having the money or energy to make my home perfect

Not being able to complete everyday tasks like the washing up or shopping

My parents having to help me shop, do errands for me and even care for me at times (my dad has helped me a huge amount with our home improvements as I stopped bringing in money to cover a repair person and I haven’t been able to help)

And so much more.

Depending on personal circumstances, this will be different for each person, just like the effects of our conditions can vary.

A huge amount of guilt came on our wedding day (14th April 2018) and it took over 2 years to forgive myself. I was due to have my third major bowel procedure as a result of bowel obstructions, but my surgeons held it off because I was marrying the love of my life. I was truly grateful that we got to have our special day after wondering if I would even make it through the year prior. I had kept myself busy in the hospital finalizing some of the plans for the wedding and even had to sign our contracts for the purchase of our new home in my hospital bed.

The day was perfect, with lots of laughter, but the worst bowel obstruction I had for a while decided to hit on the day of my wedding. My mind started questioning if I had eaten anything wrong, but I had been careful about what I was eating. I took meds and pushed through hoping it would ease, but I almost threw up on Dale (my husband) during some photos. I headed back to the hotel room, curled up in pain and cried. It was time for our first dance and to cut the cake,  and I just kept on thinking about how much money we had spent on the day, that I hadn’t spoken to everyone yet, that our evening guests had just arrived, how everyone was there for us and how much was still left to celebrate and enjoy.

I was late going down to the reception but I pushed through to cut the cake and have our first dances. I was swirling around hiding the pain I was in so we could have our special moments, but as soon as they were over, I felt this hot flush take over my body. I made it to the hotel room, but the pain took over my whole body, and I couldn’t move for the rest of the night. It was only 8:30pm but instead of celebrating with my husband and guests, I was in bed crying myself to sleep in my wedding dress.

For years I kept on beating myself up about becoming unwell. I had missed so much like the bouncy castle, bucking bronco, the musician, lighting the sparklers and dancing into the night. I felt guilt for myself after working so hard towards it and me knowing we wouldn’t get this moment again. I felt guilty for not speaking to everyone who attended as I was planning to do  later on in the night when things were more relaxed. I even looked at ways we could recreate the party with everyone that was there but it just never happened as life took over.

When I first became unwell, I even felt guilty when my parents would rush me into hospital in the early hours and my mom would stay with me until I was in a ward. She would insist on visiting me every day even though she was fighting cancer, and I felt guilty for this because she should have been resting. My husband also suffered mentally when I was in hospital, and he still struggles today as a result of this trauma. Although I had to be in hospital and I was fighting for my life, I felt guilty as it was my body creating this stress for everyone.

One thing that’s difficult to manage is finding the right balance as someone with a chronic illness when there’s a good health day. We want to enjoy it, but we have to think about the consequences. What impact will this have on us after? It’s a constant battle and the balance is never right.

For those who do manage to work, a lot of them have to make sacrifices in their personal life due to the impact working has on their health. You have to work out whether it’s the right thing to do, or if you will even be able to manage it. Then our guilt plays on our mind again when we question this, telling us that we’re not bringing in as much income as we could or working enough, or that we are letting our employees down when we have to ring in sick or leave early or start later.

The feeling of guilt can over power us on a daily basis.

It’s easy to compare our lives to what it once was or what we dreamt for it to be.

Social media also makes it easy to compare our lives to others and feel a form of jealousy when they are doing stuff you wish you could do. Even seeing other people with health conditions living their lives without as many restrictions can make you wonder “Why me?! Why was my outcome different?”

Don’t get me wrong, of course we feel happiness for others being able to do these things, and I personally am overjoyed to see people with stomas living a ‘normal’ life.

It just hurts when it can’t be you.

Guilt is a negative emotion we feel because something we’ve done or can’t do goes against our core values and beliefs. These form in our early childhood to help us understand ourselves, others and the world.

They then impact how we react, our decisions and actions in certain circumstances and situations.

The 3 forms of guilt:

Natural Guilt – Remorse over something you did or failed to do.

Toxic Guilt – Guilt leading you view yourself as a bad person

Existential Guilt – This links to “Why me?” A feeling of injustice either towards you or happening in the world.

For me, I feel all three forms of guilt and that is what makes it hard to stop feeling guilty. I’m fighting against all three and I know most people with a chronic illness or disability might be too.

The feeling of guilt is extremely damaging on our mental health and this can even impact our physical health further. That’s why it’s vital we try to restrict this feeling as much as possible.

We will either have to focus on making amends, work through the guilt, or simply let go.

It’s a hard journey and it will take longer to achieve for some than others.

Today I’m still wondering if I will ever achieve this, but I’m trying.