As with every patient my HIV journey did not stop at diagnosis. I was right there, back in the clinic the very next day. Then once a week for a while, then once every two weeks and slowly the appointments became less frequent.
As you may recall the reason I had gone for a sexual health check originally was because of gonorrhoea. The next day I was told that I did indeed have that and I also had developed sores all over my genitals. The pain I got from these sores I would describe as worse than childbirth. I could not pee without crying out loud. My daughter at the time was 2 and followed me everywhere, so while she was awake I couldn’t go to the toilet. I would scream in pain every time I went. I used to wait until after she had her bath and was asleep in bed. I would apply the numbing gel, wait 15 mins and sit in her cooling bath water and pee, this would still induce screams and whimpers from me, I had to bite my arm. I didn’t dare pass a bowel movement for days. This pain lasted for about 2 weeks. The worst of it was over in a week. I didn’t really think about my diagnosis right away as I was trying to deal with this pain.
In late August I started to feel very sick and lost control of my bowels. My entire digestive system went to shit. I was out shopping when this first happened. It was embarrassing, thankfully I didn’t have my daughter (S) with me, but I was with D who (luckily) was not experiencing any of these health problems. I’d never experienced anything like it. Waste just fell out of me, without warning.
I went to my GP. I’m with one of the large surgeries where you never really see the same Dr more than once. She stumbled over her words, made a big deal about finding special stickers for my sample and had no idea what to treat me for or to say to me about what I was experiencing. My first experience going to my GP as someone recently diagnosed and living with hiv was horrible. And I could tell she knew it also.
I lost a lot of weight. A lot. To put it into perspective when I contracted HIV I was a uk dress size 20. By November I was a size 14. By Christmas a size 12. This was a total loss of just over 6 stone in about 4-5 months. I went back to work after the summer holidays to compliments off everyone “you look so good” “you’re looking so trim” “how did you do it?” I didn’t know how to answer them. I was so weak I couldn’t even walk up the stairs. I remember one morning walking up the main staircase and having to stop twice as I was breathless. I couldn’t last through a one hour lesson without going to the toilet twice. In my subject you need to be up and about. I mainly sat at my desk and willed the day to be over. I think the kids could see I was very ill as I didn’t get much bother from them. Needless to say I was signed off work sick for a total of 7 weeks. Everything I ate (when I had any appetite) went straight through me. I told people I had a bowel condition. Most people thought I had chrones. I had only told one friend at this point.
My amazing friend came over one Sunday before I was signed off because I had had a panic attack while with S in the supermarket because I was so exhausted I couldn’t walk or push the trolley. She cleaned my kitchen, tidied up S’s toys and cooked S some dinner. I’ll never be able to thank her enough for her help in that time.
Now this was a horrible time. But it was also a happy time in places. I was finally exploring my sexuality. Having a lot of fun sexually with D. I loved my new body. Shameful as it is I was glad the HIV was doing that to me. Eating my insides. I had spent all of my adult life trying to lose weight and be ‘thin’ and I finally was. I was within a healthy bmi for the first time since childhood. My irregular bowels lasted until about April/May the following year. The worst was over by about February, that was when I stopped loosing weight and started to maintain, as my appetite came back I started to put weight on again.
I had other health issues to contend with also. A lot of My hair fell out. I have very thick hair, and to a casual observer you wouldn’t really be able to tell how much it had thinned. But I knew. I cried pulling it all out when I was in the bath.
I got mouth ulcers. These came later on, around Christmas. Multiple ones all over. This lead to extreme sensitivity and I couldn’t eat much without pain. I remember making a salad and the cucumber burning my tongue.
The last two were not symptoms of having HIV. But symptoms of my lack of nutrition from my failing digestive system and the stress I was feeling. But to me it was all because of the the HIV.
In around October my Dr started me on my ARV medication. Hoping it would stop the loose bowels and the weight loss (it didn’t). I didn’t feel any side effects from the medication, the majority of people don’t. The medication is very sophisticated. Anyway even if I did I was too poorly in other ways to notice.
My periods disappeared and then around February/March came back with a vengeance and a new problem of almost constantly bleeding came about. I have struggled to find a form of contraception which suits me along side my medication. I can no longer be on the pill as unfortunately I’m back to being too heavy.
I very much felt like as soon as one problem was becoming better something else came along to trump it. This becomes very overwhelming and surrounding all of these physical health problems the worst one I had to deal with was the depression and anxiety all of this brought about.
Feeling like the problems just keep on coming I also think this is just a side effect of being an adult and growing older. I imagine most other adults feel like they just deal with one problem after another, I am no different than anyone else my age in that respect.
By summer 2016 pretty much all of the physical health issues surrounding my diagnosis had disappeared. Apart from the bleeding which I think actually was made far worse by something else. The anxiety and depression stays. I have better and worse days. This is something I struggled with before my diagnosis, contracting HIV just made it worse!
That first year was rough. Due in part to me making it rougher on myself. But I suppose it would’ve been tough regardless. The first anniversary didn’t really mean much to me. The second one snuck up on me and hit me like a slap in the face. It was worse because I wasn’t expecting to feel anything. I got very very low around the second anniversary. There were other things going on at the time as well, but it was just another thing to deal with.
People say the worst thing about living with HIV now is just simply knowing that you have HIV. At first I didn’t believe this. Now I strongly agree. Around 50% of PLWHIV go through seroconversion. This usually manifests itself in flu like symptoms or a rash for a few weeks. I was a rare case. Not many people experience symptoms as long as I did. Now this leaves 50% of people who contract HIV having no symptoms at all, not knowing they have it at all.
Now upon reflection if you look at a picture of my life my seroconversion and related illnesses only lasted a year. I’ll have HIV my entire life. I have (hopefully) another 50 or so years to live with it. HIV patients currently have a slightly longer life expectancy than the national average. Some say it’s because studies are from mainly ‘privileged white males’ who have a slightly long life expectancy anyway. I believe it’s because we are more in tune with our bodies (much like anyone living with a lifelong/chronic illness) and when there is a problem we will go and get it checked as soon as possible rather than leave it and live with it for sometimes years like a lot of healthy people do.
Writing things like this helps me deal with the knowledge that I am HIV positive.