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As a gay Asian man with an invisible disability, I have to come out twice

I will never forget – for all of the wrong reasons – the first date in London with my now fiancé.

It had to be cut short after a pre-dinner drink to calm my nerves triggered an agonising flare up of my Colitis. Severe cramps in my stomach and joints meant I was stuck in the toilet.

I left in a hurry and went straight home to bed. The shame I felt explaining it the next day to a man I barely knew, was excruciating. Luckily, he is a doctor so he understood that I needed our second date to be closer to my West Midlands home as I felt that was safer.

This is the sad reality for many people like myself living with inflammatory bowel disease (IBD) – but it’s even more challenging as an openly gay South Asian man.

When I have a flare up, I am in incredible pain. I can’t eat or sleep, I get dry eyes so I can’t see clearly, my skin goes dry, and I bloat. I don’t want to talk to anyone.

I don’t feel sexy or attractive and historically I would always cancel dates. No one wants to be left alone for hours while their date is doubled up in agony in the toilet.

My diagnosis came about when I started noticing I was losing weight as well as my appetite in 2014. I was going to the toilet 10 to 15 times a day and there was blood in my stools. I also had horrendous gut pain, reflux and noticed my knees and hands were swelling.

So I went to the doctor and eventually received a diagnosis of Crohn’s, which was a huge blow to me. Crohn’s is an inflammatory condition of the gut, which can affect the mouth, digestive tract, intestines and rectum. The immune system attacks the tissues causing severe and debilitating symptoms.

I had always thought of myself as a healthy person and knowing that I now had to deal with a chronic illness knocked my confidence.

I had to come to terms with a lifetime of painful and embarrassing symptoms, which required awkward explanations to friends, family, and colleagues.

Many people within the Asian community struggle to understand inflammatory bowel disease. It isn’t really understood or spoken about at all. Many Asians pass it off as a stomach problem or a health issue due to bad energy or superstition. Also, disabilities and chronic illnesses are seen as a burden to an Asian household and are seen as taboo. 

After three days of bleeding profusely every time I opened my bowels, I went to A&E

My problems were often ignored or passed off as something less serious. At around the same time as my diagnosis, I stopped living a lie and came out as gay. It felt like I was coming out twice. 

I have lost count of the amount of flare ups that have affected me physically, mentally, and emotionally over the last seven years. Severe pain has led me to have arguments with my family, depression from the uncertainty of what I might face in the future and anxiety that I may become a recluse because going out is fraught with the worry of whether there will be the right food to eat or a toilet nearby.

To add to this, I have found sometimes the gay community can be very focused on looks. Sadly, not being the right colour, having the right facial features, or even having the right mannerisms have been issues raised by some of the men I have met.

Because of this, at the beginning, I couldn’t imagine feeling comfortable enough to show my bloated body to a partner during a flare up. Unfortunately, stress, anxiety and physical burn out can cause flare ups, which can only exacerbate my worries.

At what point do you bring up the fact that this condition can affect my libido, energy, flexibility, and pain threshold. It became such a minefield to navigate that I shut myself off from the world. My mental health suffered. 

My fiancé is a wonderful man but we didn’t have that honeymoon period you expect at first. I was insecure, I was exhausted, I was flaring up and I felt like a burden to the man I was hoping to create a future relationship with.

It was incredibly hard for us both, and we still struggle now when I have a flare up. Often I can’t move with pain for days. This is difficult for my partner and requires a lot of patience and understanding.

We can’t be intimate on a whim and sometimes there must be a degree of careful planning or cutting the deed short if it’s too much for me and my body to take. However, it is possible. 

Earlier this year, during lockdown, I was hospitalised twice due to severe bleeding. After three days of bleeding profusely every time I opened my bowels, I went to A&E. The pain in my abdomen was so unbearable that they gave me morphine and codeine.

I felt embarrassed, defeated, angry and incredibly helpless. My condition had got the better of me and I was now facing having to stay in hospital during lockdown – alone, in pain and depressed.

That’s when my diagnosis changed from Crohn’s to Colitis – a more isolated inflammation of the colon (small intestine or bowel) as opposed to the whole gut – and I was left with a course of heavy duty medication and steroid enemas to help control the inflammation and reduce the pain and symptoms at the source of bleeding.

Imagine, as a conservative South Asian gay man, what I was going through? I found it uncomfortable to talk about bleeding every time I went to the toilet or to have numerous rectal examinations. I also couldn’t cope with being a burden. 

It left a dark cloud over me and every time the thought of sex came up it scared me. I was anxious about how I would perform and deal with the intimacy. I knew that if I got carried away with my thoughts and concerns, it could trigger some pain and a flare up the next day.

I have now learnt to work around my condition and how I am feeling. I know what works for me. I know when to speak up and I also find ways to minimise the possibility of getting a flare up by preparing in advance. I accept I can’t always be as spontaneous as I would like.

I hope reading my story helps motivate people to talk about the taboo and stigma surrounding illness, sexuality and intimacy. We need more understanding and compassion for the issues faced physically, mentally, and emotionally by sufferers of IBD who identify as LGBT+.

Inflammatory Bowel Disease Awareness Week is in full swing but it is a painful reminder for me of the issues I deal with on a daily basis.

I want people to understand that being gay, Asian and disabled comes with a whole range of issues but it also gives me the opportunity to build adversity, strength and compassion. I want more understanding, support, and awareness. Ultimately we need more investment into community services and research, to support our needs. 

This isn’t a story of complete woe, but the struggle is real.

Being gay in a heteronormative society is hard. Having a chronic invisible illness in an ableist world is equally a struggle. Yet, I’m not the only one that faces both issues together and so I wonder why I feel so alone when faced with the intimate issues and struggles as a gay Asian man with IBD?

I have learnt to live with my condition and I have good days and bad. For me, a plant-based diet helps to control flare ups and I share recipes to help others on my site, Dish Dash Deets.

Good healthy food, looking after my wellbeing and being creative helps me.

If sharing this helps just one person, then I’ll know it’s worth it.

Dr Sunni is the founder of Dish Dash Deets, a platform focused on health coaching and food education with a mission to support individuals and corporations on holistic wellbeing. You can also follow him on Instagram.

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