"Diagnosis and treatment"

Dear HSC staff,

thank you very much for the great effort you are doing every single day to fight the Covid-19 pandemic, I do appreciate it. Please note this is not meant to be a complaint, rather a description of the GUM clinic service based exclusively on my personal experience.

Towards the end of 2018, I was diagnosed with HIV, and that diagnosis simply destroyed my life. I developed anxiety, panic attacks, I had thoughts of self-harm, self-loathe, self-destruction, hopelessness, worthlessness and so on and so forth. I really think I reached the lowest point in my life there, wishing myself not to wake up the day after. I just wanted to disappear in a black hole and let the world forget about me.

The reasons of my state were due to two factors: the diagnosis and how it was managed by the Downe hospital's GUM clinic. Since the very start, I reckon the staff did not fully acknowledge how I was feeling for many reasons.

I never heard of health advisors, consultant nurses, social workers, etc, before. Every appointment there was somebody new, therefore, I never knew exactly how to refer to people. Nobody has ever allowed 10-15 minutes to explain why those people were there.

Another thing that really got me down was the fact that my condition was being underrated. I understand this disease is not the worst that can happen to somebody, and also that it is not like it used to be 30 or 40 years ago, but this does not change the fact that my personal view on HIV was terrible (I made the staff aware of this many times), but I was always getting told that I have not been diagnosed with cancer, but would I have preferred cancer? Or phrases suggesting it is just HIV, one pill a day and I will be healthy again. These comments really got me down and made me feel like an idiot.

I was also being asked whether I was dating somebody or I was sexually active, which I have told them many times to be the least of my thoughts. Moreover, I have noticed a lot of pressure for me to join Positive Life NI or other similar organizations. I have said many times I was not feeling ready, every appointment, like a broken record, I was being asked if I had contacted Positive Life yet? 

The worst was when, during an appointment, a doctor (I do not remember their name) spent literally 10-15 minutes telling a few possible ways I could have died for should I have developed AIDS. That day, I went home, got drunk and banged my head against the wall a few times. I knew all that, I did not need to listen to it again. I was down, I told the staff many times how I was feeling (it was also evident because I looked like a zombie), but I feel like everyone just thought I was putting up a drama (I have no evidence of this, but this is how I have perceived their behaviours and facial expressions).

I have decided to be referred to the GUM clinic in Belfast when, after skipping a few appointments for work reasons (I always gave plenty of notice beforehand and also every appointment was causing me terrible anxiety), a member of staff phoned and told me they were going to stop dispensing my medication if I kept skipping appointments. That was the last time I went to the Downe hospital's GUM clinic, and I am more than happy about the service I have received in Belfast.

Getting to the point - I did not feel valued as a person, I just felt like a case, a process, a step-by-step procedure to follow. I think the staff was expecting me to accept my condition after a month, but so it was not. What I want to say is that, whichever the diagnosis, answers like did I prefer cancer? or that this is the way it works, do not make people feel better. If it works that way for somebody, it did not for me.

I am writing this now because, after long time and after asking for help (when I was ready to ask for it), I felt ready to share this with you, and I hope this can help you improve your service, which is good, but it should be more cultural-aware and respect individual's time.

Lastly, I would like to repeat this is not meant to be a complaint. Although it may sound such, it is not. It is just a feedback about my experience at you GUM clinic.

Thank you very much for reading this far.

Take care and stay safe