PrEP triggered my health anxiety (also known as hypochondria) in a way I couldn’t have possibly imagined.
I spent a lot of time thinking if I should share my story. What good would it do? Would it do more harm than good?
I don’t want to discourage people from taking PrEP, just because I didn’t go well with it, doesn’t mean it won’t work for you. It is a great medication and serves its purpose extremely well.
In this post, I’m going to do my best to explain exactly how it affected me, or rather how PrEP seemed to spark my anxiety.
It’s a rather difficult post to write about, because it can be a little triggering for me to recall the events that lead me here writing this post.
I should also let you know this could also be triggering for anyone that experiences health related anxiety like I do, or any other mental illness for that matter.
PrEP SEEMED TO HAD TRIGGERED MY ANXIETY
Anxiety for me has always been a part of my life, but it wasn’t debilitating until recently.
I decided to start taking PrEP, a medication that helps in preventing the transmission of HIV.
Though I was told by my Doctor that there would be little to no side effects from PrEP, my anxiety told me otherwise.
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I found myself with the box of PrEP tablets in my hands and before I knew it, I was reading the pamphlet that comes inside the box and making sure to read every line as carefully as I possibly could.
Focussing on the list of side effects is where my attention was drawn. I couldn’t stop reading about every kind of possible interaction that could take place.
Then the googling of side effects started.
“And down the rabbit hole I went. Every article I could find, every YouTube video I could watch I would carefully analyse.”
Did it stop me from taking the medication? Almost, but I decided to try it.
I thought this was a win for my anxiety. I took the medication as prescribed, I was sure everything was going to be perfectly fine.
It did not go down well for me.
DID PrEP CAUSE MY ANXIETY?
Did I experienced side effects from the PrEP, or had I just experienced a anxiety or panic attack? I do not know. It’s possible I had a combination of all three.
I was so scared at the time that I had to call my parents to come over because my whole body was shaking. My breathing had become shallow and my heart rate increased.
My thoughts got out of control and I convinced myself that something was horribly wrong. Deeper down the rabbit hole I went.
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It would be best, my parents and I had decided that I not be left alone, and I ended up going back to their place for the night.
I was so incredibly dizzy and nauseous simply walking to the car, I thought I was going to faint.
Once I arrived at my parents place, I felt a little calmer, though the anxiety attack persisted.
I went straight to bed and tried to meditate using the CALM app, which if you haven’t used I highly recommend. It is a great idea to practice meditation every day, the more often you practice meditation, like anything, the better you become at it.
I was in a complete panic as to what I should do to calm myself down, the app, though great at other times, wasn’t working for me this time.
As I lay there, shaking, crying, with my heart racing, I tried to tell myself to calm down, that every thing was going to be fine. Many other people have taken this medication before.
My logic at the time was that it was a new medication and my body was getting used to it.
‘NOCEBO’ VS. ‘PLACEBO’ EFFECT
I later came to find out that it most likely wasn’t side effects at all, and I was experiencing what doctors call the ‘nocebo’ effect.
It’s essentially the exact opposite of the placebo affect, where anticipating side effects have a more negative effect than they otherwise normally would.
After about 4 or 5 hours, most of the worst feelings had passed. Though I wasn’t feeling as bad as I was, I felt as though something was still off.
“I have no idea how I managed to sleep that night. Pure exhaustion from panic may have just caused me to eventually pass out.”
I woke up the next morning and I felt some what fine. Nothing much had changed other than a little worry about the pill I had taken the night before.
That day I didn’t focus too much on the medication. Perhaps it was just a one off? Maybe everyone experiences that horrendous feeling the first time round?
PrEP ANXIETY AND ATTEMPTING TO TAKE IT AGAIN
So the following night, I decided to take it again. From what I read it could take a few days for the body to get used to it, maybe it wouldn’t happen again.
Unfortunately it did, and it was much worse.
The feelings from the night before seemed to had been amplified and I felt like I was completely losing control.
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Somehow I made it through the night once again, but this time I woke up with dread. I was fearful of how I was going to feel throughout the remainder of the day. Constantly worrying about what the medication might had done to my body and how long it would be in my body for.
I went straight to my Doctor that day, and in a panicked state broke down and shared my concerns. I was not going to take the medication anymore, and I was told it was extremely unlikely the drug caused any long lasting side effects after two doses.
Still, I couldn’t get it off my mind. What had I done to my body? Why was it turning on me?
THE NEGATIVE CYCLE HAD BEGUN
This seemed to be the final straw for my body and I have been constantly anxious ever since.
Then started the frequent visits to my Doctor every time I felt slightly off. Every time I would visit I would feel ridiculous. I just had to know from a professional that I was okay.
It was then I had to have a mole removed from my back, and that’s when a new fear popped up: I have cancer. I was so sure of it.
For a week while I was waiting for the biopsy results, I again got lost in literature about cancer.
“Depending on what information I read would dictate how I would feel.”
Forums being the absolute worst of the bunch, people describing their symptoms in extreme and vivid detail. That was it for me, I just knew that I was dying.
The biopsy came back and it was completely benign. I was relieved. But I still had a feeling something was wrong.
My Mum picked me up from the Doctor and I broke down in tears in the food court. I felt like I was losing my mind.
EVERY HEALTH CONCERN FLARED UP MY ANXIETY
Every little thing would set me off and I could not seem to shake the feelings. The thoughts persisted. The bodily reactions got worse. My hypochondria gre stronger.
That was late November 2020 when it started happening. It is now the end of March 2021 and I’m just starting to get back on track.
I’ve been seeing a Psychologist and a Psychiatrist which have both been extremely helpful. Not only in making me feel safe, but providing the right tools and medication to treat my condition.
My symptoms were all over the place and were fairly common with other people that experience anxiety and depression. I had about four panic attacks in the space of about three weeks.
- Couldn’t focus on anything for too long
- Found it very difficult to eat and when I did it was barely anything
- Constantly worrying about how my body was reacting to the medication (even though I had only taken it for two nights) I was convinced it had damaged my liver
- Emotionally I was unstable
- Shaking nearly all the time
“I had about four panic attacks in the space of about three weeks thanks to my hypochondria.”
As soon as my anxiety started, I started seeing my Doctor immediately. My Doctor has been very supportive during the entire process. It was a little difficult to treat because the medication that I needed I was frightened of so there was as a lot of jumping around in the beginning.
Making things worse for myself, I continued to google and read the pamphlets inside the medication. This further fuelled the flames of my anxiety.
I’ve since been able to slowly learn not to google anything health related.
DO NOT GOOGLE YOUR HEALTH CONCERNS
If you suffer from health anxiety or hypochondria like I do, this would be my number one tip: do not google anything.
Should you have any concerns, no matter how big or small, see your Doctor. They are trained professionals and can give advice based on your own personal medical history.
Everyone, including myself told me to stop googling, but I couldn’t. This is one of the many symptoms of hypochondria. I felt like the more I knew about the symptoms I thought I was experiencing, the more prepared I would be if something bad were to happen.
“I’ve since come to realise that the less I know about an illness, the better it is for my anxiety and relief from hypochondria. It wasn’t the PrEP that causing the anxiety, it was my anxiety making me think it was.”
Your Doctor will tell you the most important t things to look out for when starting medications.
Whatever possible side effect was written on the pamphlet or whatever I read on the internet, I would feel.
That is how bad I got.
IT WILL AND DOES GET BETTER
I’m happy to report that I’m now getting back on track after seeing a Psychologist and Psychiatrist. I have been taking the medication that I have been prescribed and am slowly getting better. I am lucky to be surrounded by people that support me and listen when I feel overwhelmed when my anxiety and hypochondria is getting out of control.
While I must say that PrEP didn’t cause my anxiety or my hypochondria, it played a role in how my anxiety began to transpire.
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I have always been an anxious person, and this new medication seemed to be the tipping point. Hypochondria is a real and scary thing.
YOUR FEELINGS ARE VALID
I want you to know that your feelings are valid. Don’t feel silly or ashamed for how you feel. You can’t change that, it’s just how it is.
But if you can learn to recognise that you need help, you’re already one giant step closer to feeling better.
I’m not a Doctor so I cannot recommend you take PrEP or not, I can only tell you how it affected my anxiety. It is a great medication that is doing a fantastic job in reducing the spread of a once deadly disease.
It also helps in reducing the stigma that is attached to HIV.
Honestly, it is doing more good than bad. It is just unfortunate that it seemed to have ignited anxiety and hypochondria for me.
As always, I hope you are staying healthy, and more importantly keeping safe.
If you or anyone you know is experiencing distress you can reach out to Beyond Blue: Beyond Blue’s support line is available 24/7.
Lifeline: For crisis support, Lifeline provides a 24/7 line, as well as online resources on a range of issues.