IDPWD – Not all Disabilities Are Visible, Nav Johal

03 December, 2020

Guest writer and Colostomy UK ambassador, Nav Johal, shares her story of life with Stoma on International Day of People with Disabilities 2020, as the theme this year is ‘Not all disabilities are visible’: 

I would have thought by now Boris would be gone, no not the Prime Minister. That’s the name I have given my stoma.

I should have reached the end of my treatment and be getting back to regular duties at work, getting my career back on track, and getting back to ‘normality’. Instead I feel like the pause button has been hit and it’s jammed. So I still have Boris as covid had other ideas on what track my life should be on right now, not just me, covid has changed plans for all of us for 2020.

In February 2019 I was diagnosed with bowel cancer and in March 2019 I had surgery to remove the tumour in my rectum, and had an ileostomy, welcome Boris. At the time of diagnosis my mind was all over the place and the thought of having a bag for life was something I didn’t even want to think about. I told my consultant that I want to try and see if things can be ‘fixed back to normal’. If at all possible I want to have an ileostomy and then in the future I have the chance of being reversed. Due to how low the tumour was the chances of a successful reversal of the stoma are slim. If a reversal isn’t successful then I will have a colostomy. But first things first, let’s beat cancer.

Fast forward a few months I have beaten cancer, and I still have Boris. Cancer treatment hasn’t caused me to lose my hair, my stoma is hidden by clothing, I am trying to be the same Nav I was before cancer. Because I don’t ‘look disabled’ when I started using disabled toilets at first I would feel a little anxious. One of the first times I used a public toilet there was a woman waiting to use it too. She seemed a little irritated and she turned to me and said ‘the girl that went in there didn’t even look disabled.’ I am not sure if that was aimed at me, the woman that had gone in before her or both of us. I asked her if I looked disabled, that I was waiting to use the disabled toilet and if people would think the same about me. She didn’t answer me but I know I gave her something to think about. The ironic thing was the irritated woman didn’t ‘look disabled’ either. Over 90% of disabilities don’t require a wheelchair. Some disabilities are invisible. Your reaction to them isn’t.

The cancer has gone but I still find myself feeling like a cancer patient. During the lockdown I started to feel unwell again; dizzy spells, light headedness, weak, lack of energy and struggled with putting on weight. Having a stoma means our body does not absorb all the nutrients from food and drink, dehydration can be an issue too. People with stoma’s can develop deficiencies and so I am trying to be one step ahead and I am taking supplements to top up my nutrient intake.

I was feeling unwell but my blood tests were all okay. Thousands of people have missed out on regular check-ups for various illnesses because of covid, I missed out on my 12-month cancer check-up. My GP told me to speak to my oncology nurse for further scans and tests as I had missed the 12-month one – fingers and toes crossed the big C had not returned. My 12-month check-up ended up being my 18-month check-up. Thankfully the tests came back all clear and the cancer has not returned.

I don’t want to imagine what it would be like if I was diagnosed this year, the uncertainty and the delays. How long do you have to wait before you get a scan, and whether you would get the treatment you need. Being alone in hospital because no one is allowed to visit. The aftercare being limited due to home visits being reduced. It is never a good time to be ill but if there was ever a bad time then this is it.

I had a minor operation in the beginning of March for preparation for a reversal of my stoma which was meant to be end of March/beginning of April but due to covid this was delayed. In early summer things were looking better so in July I had the operation to prep again, hoping to have the reversal in August or September. Lockdown2.0 had other ideas. I am still waiting on the reversal operation, and I am still waiting on a test which the hospital haven’t been able to complete this year. Something to do with availability of equipment, and face to face appointments being changed to over the phone during covid. The test is completed internally and I know technology has advanced but it’s not something for over the phone. I have noticed that my medication brand has changed 3 times during covid. It’s worrying time for people that are ill.

In the meantime I have a stoma, an invisible disability. Although I feel like life is on hold I haven’t let my disability hold me back. Before covid I was back to playing football, running and going to the gym. My workouts have changed to at home circuits, I carried on with running and added cycling to my activities. I have tried to motivate others around me to be active, sending daily short challenges to ensure they step away from their desk and get their body moving, even if it’s only for a minute. I’m meeting up with friends who live local for walks, coffee and a catch up. That way we are keeping each other from feeling too lonely whilst working from home. I am running weekly online exercise sessions for my footie girls and also for my team at work: Tone It Up Tuesday, Wellbeing Wednesday and Transformation Thursday. Keeping others active, keeps me active too. It’s motivation for me and for them. Even though the gym is shut and we can’t play football I am feeling like I’ve got some lockdown gains from our regular exercise sessions together. I would definitely have lost motivation to stay active if I didn’t have people to walk with, cycle, run or workout online with.

Importantly for me I have been able to get back to work full time during lock down. This is something that has worried me, having a stoma and working. Looking online on social media I have seen other ostomates that are in the blue light services, this made me think why should a stoma stop me from being a Police Officer. Obviously life can’t be exactly the way it was for me but with some adjustments and protection, with the right support I know I can still do my job. With my disability I can sometimes have days when I don’t feel great, it’s important to use your colleagues, support groups and your family and friends. You need people to hold you back when you push too far, whether it’s at work, exercise, activities, or just general life. You don’t need to stop completely, but pause and take a breather, maybe make little adaptations. Then take your finger off the pause button and restart.

At different stages in your life different things can define you, and it is not one thing that defines you. I am a woman, daughter, sister, partner, friend, person of colour, a police officer, an active ostomate, a cancer survivor and I am disabled. At different stages in your life the focus will be different on what is defining you. What about you do you want to define you, right now?
My ability is stronger than my disability.

Nav Johal