People misunderstand my illness and assume that I’m drunk

If people can think before judging, actively listen, and give people who might be struggling to communicate the time they need to process and respond, it can make a world of difference to them

Dealing with a challenging neurological illness that causes mental health problems is bad enough – but when people assume you are drunk, the stigma can make you feel even more isolated and ashamed.

I know this first-hand, because I live with Huntington’s Disease – and I’ve seen the way people respond when I’m out and about.

Huntington’s Disease is relatively rare. There are around 8,000 people living with it (or around one in every 10,000 people) and it’s a condition that affects men and women equally. It damages nerve cells in the brain, and this damage gets worse over time, affecting movement, cognition and mental health.

I first noticed that something wasn’t right when I was taking antidepressants following the death of my son. I remember I was doing a loft installation in someone’s attic for work – something I’d done for years – and as I stepped back my foot slipped and went through the ceiling.

I wondered if it was the antidepressants, because I also began noticing that I was finding it difficult to walk in a straight line – I felt really unsteady on my feet. I also became quite clumsy, and my speech would sometimes become slurred.

When I saw the GP I remember him saying it was unlikely to be the meds, but he didn’t really offer me any other explanation, so I didn’t receive any treatment for a long time and the symptoms just got worse.

After moving house and seeing a new doctor, I was eventually diagnosed with Huntington’s Disease at the age of 46. I was asked if my dad had been diagnosed with it, because it’s a hereditary illness, but as far as I knew he hadn’t – although looking back there were signs that there was something wrong.

Even though I received the diagnosis, I wasn’t really getting much help. I was moved into a retirement village with on-site care, because that was the only solution my doctor at the time had for me. But there wasn’t really any specialist care for me and my condition. It really started to affect my mental health, too. After all, I’m only 54 at the time of writing – I don’t think anybody expects to be in a retirement community at that age.

I found it difficult getting out and about and communicating with people, which made me feel really isolated. When I look back, it had been like this for about six or seven years – after the symptoms began, but before the diagnosis was given. I never went out at night, I didn’t stay over anywhere and I didn’t invite anyone back to my house. I was just existing.

When I did make it out to the shops, that’s when I noticed people were treating me differently. I remember about three years into my diagnosis I was going to the garage to grab a few bits and pieces from the shop there. I was living in the countryside, so the nearest shops were quite a distance which is why I always ended up at this same petrol station.

When I went in, I remember people looking at me in a strange way and asking if I was okay. Sometimes they would become abrupt with me, not giving me the time and space to finish my sentences and ask me what I needed. I could tell they thought I was drunk, because the symptoms of Huntington’s can present like that. It made me feel really ashamed, so I started planning my trips to the shops to avoid as many people as possible – sometimes walking to the garage at 9 or 10pm.

After a while, I started to feel like giving up. I was mentally drained, I’d lost my son, I had this illness that seemed to be getting worse and worse, and I felt ashamed. I was stuck, and I didn’t want to endure another seven years like the ones that had just passed.

That’s when I decided to take too much medication.

Thankfully, I survived the overdose. My GP came out to see me that weekend and told me I needed help.

Because of the risk to my life, I ended up being sectioned.

Being sectioned under the Mental Health Act was tough, as there is so much stigma that comes along with it. But, ultimately, it led me to the right place for specialist treatment.

It was April 2021 when I was first introduced to St Andrew’s Healthcare – a mental health charity that provides specialist care. There are lots of crossovers with Huntington’s Disease and mental health, and St Andrew’s was able to offer me a really personalised care plan.

I was provided with round-the-clock inpatient care. I had my medications reviewed, regular therapy sessions and speech therapy. After a while I felt I was able to better communicate with people than I had in years.

After so many years of just existing, I started to feel more hopeful. I started to look ahead again, and to believe that there was a chance for me to improve my quality of life. Not only was I getting the right treatment, I felt part of a supportive community, too.

I’ve been involved in a few patient social activities, and I also take part in awareness raising activities with the St Andrew’s team – giving talks and taking part in webinars and training videos. Being able to give back is new to me because I didn’t really feel that I had anything to give before. I feel really good for it.

I still leave the grounds at times, and I do find it difficult worrying about what other people think, but I now carry a little card that I wear around my neck now so I can easily communicate that I have Huntington’s Disease.

I always find it easier to breathe when I get back onto hospital grounds, because there is so little awareness amongst the general public; and that’s why I’m speaking out.

It’s easy to make assumptions about people from first glance, but I want others to know that, just because somebody might look drunk or struggle to communicate, it doesn’t mean they are intoxicated or of a lesser intelligence. There are many illnesses that can affect somebody’s balance, speech or cognition – and it’s worth considering that before jumping to conclusions.

I know that, if there was just a little more basic awareness of Huntington’s Disease, I would feel far more comfortable when I head out into town. If people can think before judging, actively listen and give people who might be struggling to communicate the time they need to process and respond, it can make the world of difference to them.

If this article can play some small part in addressing the current lack of awareness around Huntington’s Disease, I feel that it could help so many others who have been “existing” like I was. A little bit of empathy goes a long way.