Louise

March 2023, I’m in Chelmsford, Essex, I’ve come to speak to a group of people with lived experience of addiction and dependency about the Anti-Stigma Network to gather insight, and feedback and listen to their experiences.

I sit down to speak to a lady called Louise, a smile spreads across her face as Martyn her key worker introduces her, she looks happy to be here and seems eager to share her experiences, she is full of the joys of early recovery and both her and Martyn are proud of the journey she has made over the last couple of months.

Louise explains that she is due to go back into hospital tomorrow and once she gets the all clear she is looking forward to going on holiday, she hasn’t been able to go away for a long time because of her health.

Louise begins by taking me back 4 years, to when she first started experiencing health problems due to her drinking, she is not sure exactly how long her drinking had been a problem. “I didn’t see it for a long time,” she says, “I guess that must have been the addiction, other people did and would comment on my appearance, how much weight I had lost but I kept telling myself I was fine.”

Louise is well acquainted with the hospital, she has had numerous admissions over the last few years, she recalls one of the first times she was sent to The Acute Medical Unit (AMU). “I was at my GP surgery, I don’t remember walking in, I just woke up on the floor and was in pain, I had had multiple seizures. My GP was good, he has always been supportive and non-judgmental, they called an ambulance, and he wrote me 2 letters to take with me to the hospital explaining my medical history and recommended that as well as investigating my pain, I should be referred for detox and rehab. When I got to the AMU, I felt like the consultant didn’t want to know, I felt like he patronised me and then was discharged the next day with no follow-up.”

When I asked her if she felt like she was dismissed because of her alcohol use she answered with conviction, nodding her head “Definitely” she explains, “I felt like he wasn’t interested in treating me. He told me “It’s not my job to get you into detox, we are not here to do that. I have done everything I can to appease you.”

Louise has internalised some of the stigma she has faced and blames herself. “I know it’s my fault because of the alcohol, I get that they are busy and stressed,” she says, “But I wasn’t there because I was drunk, I was in pain and needed medical help”.

“Some of the nurses come across as if they have better things to do rather than deal with a drunk, I get it, it must be very difficult dealing with people giving it large, that wasn’t me though I was just curled up in pain”. Two days later she was admitted for 17 days and diagnosed with Peritonitis, had 4 litres of fluid drained off her abdomen, and was put on antibiotics for the next 3 months.

Louise quickly moves on, I get the sense that it’s still uncomfortable for her to think about, I am conscious not to re-traumatise her by going into too much detail about difficult past experiences and how they made her feel. She leads the conversation and I listen.

“Generally, I have found that they are all pretty good, especially the consultant from the gastro ward, he’s forceful with his advice, but you can tell he means it well and that he cares. He had a good understanding of alcoholism; he knew a lot and because of that I felt understood and not judged”.

“When I was admitted to the gastro ward, they were all really nice, they are used to treating people with liver failure and some of those will be down to alcohol, so there is a lot of understanding, they always signposted me to the Alcohol Worker”.

She told me about the first time she considered engaging in support for her drinking, she had attended A&E with pancreatitis and was in terrible pain. “I was not in a good place mentally, I was asked if I wanted to be referred to the mental health team, I waited for 4 hours to speak to someone and once I did they breathalysed me and when I blew over the drink drive limit, they told me to go, I hadn’t had a drink that day, it must have been from the night before. They told me there was nothing they could do to help me, to come back when I had stopped drinking, but obviously I couldn’t”.

Louise stopped drinking 7 months ago and her health has improved significantly, she has built a strong recovery network around her and is proud of the changes she has made and the journey that she has been on. She describes how she has not laughed like she does now with her friends that she has met at her recovery groups for a long time.

Although she has the full support of her family, there are close friends that Louise won’t talk to about what she has been through. “I hate the word alcoholic, I still have to get my head around that, it’s a label and with that comes so much stigma and preconceptions of what an alcoholic should be.” She feels that labelling people by their substance use makes them feel invisible. “I am Louise first; I am just a normal person like everyone else. I had a job in the city and that’s where I got the taste for wine, I never got arrested, was not violent and never fell out with anyone”.

We talk about the media and the way that people who are alcohol dependent are represented she seems reconciled to the fact that these stereotypes will always exist “You see things on the news and on the tele, and in real life it’s not actually like that, I mean it’s just society isn’t it, I don’t think they mean to be nasty, it’s just they don’t know how it feels”

Louise is starting to understand how powerful her voice can be and how celebrating her recovery and sharing her experiences can start to break down some of the labels and stereotypes that are associated with people who have experienced addiction.

I thank Louise for sharing her story with me as part of my work on behalf of the Anti-Stigma Network and tell her that I admire her courage. Although Louise wanted to share her story, she did not feel comfortable in revealing her identity, we have changed her name to protect her anonymity. “Bit by bit,” she tells me, one day she thinks she might be able to be more open about her experiences but at the moment she is not ready to face the judgments and questions that doing so would bring.