Loss of Sense of Self on Dialysis

Loss of Sense of Self on Dialysis

Entering end stage renal failure is a life changing moment.

Understanding the realities of what dialysis is and its importance is another life changing moment.

Going home from the hospital and starting home dialysis is when that life changing moment becomes your new reality.

Adjusting to that new reality is difficult, and perhaps recognising that change can be as elusive as what causes drain pain some nights and not others. It may feel apparent at first and you can feel prepared of the practicalities of dialysis when you return home from hospital but it is the minute restrictions in diet, socialising in the evenings and in what activities you are prepared to take on such as swimming or attempting to pick up a niece or nephew. Before dialysis, you would have never had second guessed it but now I pause and think better of it and decide an alternative course of action.

The accumulation of all these small hindrances and changes in your lifestyle eventually become a lifestyle you no longer recognise and can quickly descend into a feeling of what part of my current lifestyle on dialysis resembles my life before dialysis. Unfortunately, this exercise wasn't particularly useful or conducive in putting me in a good mood as I often found very little resemblance and that took a long time to accept.

The greatest struggle I faced on dialysis were sometimes the nights where I lie awake connected to the machine and have foolishly let my mind wander too far into the past.

What starts as swimming in nostalgia of past holidays and meeting with friends or even work socials, quickly becomes tinged with sadness and regret for not enjoying those moments more or doing more of it when you could.

Even when having cut off all social media to avoid comparisons to other people's filtered lives, I always had my memories and somehow the feeling of comparison to my past self hurt more than I could have imagined. Most likely because we look back in hindsight with wisdom of the present, which does not paint the same picture of what was there at that time. I both glorified my happiest moments and condemned actions which I felt contributed to my current situation. These dwellings were not productive other than leaving me filled with sadness, anger or self blame.

Some days and nights, I would look try to look to the future. There was nothing.

I have always been entrenched in the educational system, I was practically programmed on always knowing what was going to happen next: studying for the next set of public exams, applying for university and then finding a graduate role at some big firm. Life up until the age of 23 had been a clear, tried and true pathway to follow.

But now, on dialysis, there was nothing but uncertainty. The future was constantly shifting and nothing was definite. It was if there were so many possibilities that each future would crash into one another into a blur until finally darkness. I had no concept of the future during the first year on dialysis.

I lived my days like I was treading water just trying to get through the days and nights on dialysis peacefully, only to be greeted by the next day and counting down the hours until I had to start thinking about setting up my machine again.

You'd be surprised by how much we base our self identity on what we do day to day, the choices we make in the past and the plans and ambitions we make for the future. Even the aspirations and the hope of doing things in the future.

However, I felt all of these were robbed from me when I started dialysis.

I did not recognise my day to day life.
I regretted my past choices with disdain.
I couldn't bare the hope of aspiring the things that I once wanted and I couldn't 'see' where I was going in the future.

I had lost all sense of conviction in the decisions I had made and could not make any decisions for the future. I felt stuck in limbo.

I believe what I have described is the loss of my identity, the loss of my sense of self. I no longer really knew who I was nor did I know where I was going. It was a pretty bleak time but seemingly quite easy to just carry on in the routine of the day to day but never progressing further. The monotony of reliving the same day again and again.

Where Am I Now?

I've since gone on a bit of a journey of self-compassion and self-discovery in finding a 'new' identity that is not defined by my career or the things I achieve but more the things I choose to do and the enjoyment with which I garner from them and even focusing on embracing the better personality traits that I have and let that guide me in the actions I take today in the hope they may bring light in the future.

It's still difficult for me to picture the future but I have come to realise, perhaps this is not akin to just dialysis patients but all young adults being spat out of the education system. I was a barely a year or two out of university and was just finding my feet in my first corporate job. Throwing kidney failure into the works was always going to disrupt my life but I think all it did was amp up the level of uncertainty of the future that all young adults face to an insane level.

There are no guarantees in life for anyone, no one knows the future.
The phrase "Man Plans, God Laughs" comes to mind😅.
Life is unpredictable for everyone!

Man Plans, God Laughs


Concluding Remarks

Today's post was more about reflecting on the emotional and mental state of my first year on dialysis. At the time, I felt very alone and strange for feeling this way. I found it particularly alarming that I could never stretch my mind to the future. I could barely plan a day or two ahead!

However, since starting to meet and sometimes coach new starters on peritoneal dialysis, I have realised that this is an entirely normal reaction! I listen to many patients describe in their words a peculiarly similar feeling of sense of loss of their identity, their future and regrets of their past, swirling together into a soliloquy of melancholy and hopelessness.

I do my best to cheer up these patients by saying that they are not alone in feeling this way and that is OK to feel this way! To not dismiss what is happening to them, the changes in their body and lifestyle on dialysis and to also remind them that we do accommodate for this lifestyle to prevent ourselves from dying!

I think sometimes that is all we need to hear and certainly what I needed to hear at the time. To show myself some self-compassion and give myself the space to grieve the life lost and begin to accept the life I still have. Perhaps planning for the future is not a necessity as it once was at 14 years old picking out their GCSEs. I have since followed the sage advice of my therapist and countless other self-help books that is to stay in the present, enjoy the days you have. Make choices that bring you joy and happiness.

Growing up, education was always at the forefront of my mind and sacrificing the now to study for grade results in the future was instilled well both in school and at home. However, circumstances change when you become a graduate and an adult living in the real world, you have the power to experience the now as you are.

I will leave you with this poignant teaching by Lao Tzu:

Lao Tzu

“If you are depressed you are living in the past.
If you are anxious you are living in the future.
If you are at peace you are living in the present.”

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IGA Nephropathy confirmed at 21. Crashed into End Stage Renal Failure at 23. Now, I share with the world my 3 years lived experience on Home Peritoneal Dialysis and Post Transplant Living 10/10/2023