The Mighty Logo

When Chronic Illness Leaves You Mourning Your 'Before' Self

When talking to people who developed a chronic illness later in life, (by this, I mean they didn’t grow up with it) they will often describe a “before” and an “after.” There is usually a point in time, or an event, that can be identified as the moment where their life changed. People won’t necessarily realize that in the moment, but instead can see it when looking back and reflecting. Sometimes it involves an accident or a viral illness, sometimes that moment is when a doctor gave a shocking diagnosis or, for some people, it is an emotional trauma they lived through.

I certainly have an event. It was an accident that took only the briefest moment; a moment that was horrible when I lived through it, but it took me a long time before I would realize the extent to which it was going to impact my whole life. And I would like to share that moment with you.

My “before.”

I was super fit, and very independent. I moved countries from England to Australia by myself in 2012 and set about making a new life for myself. I played roller derby and absolutely loved the power and strength this sport made me feel. I had retired from roller derby a few months prior to this event, due to injury and generally getting over the huge time commitment required, but I still maintained my fitness and coached sessions for beginner skaters. I did CrossFit, I rock climbed and cycled, as well as halfheartedly attempting running for fun. I was a veterinary nurse and worked long shifts on my feet without thinking twice about it. I loved music and going to gigs and was generally enthusiastic and passionate about life. I had just met my boyfriend, and everything felt great.

The event.

It was a routine day at work. Another veterinary nurse and I were restraining a French bulldog so the vet could place an intravenous cannula. The dog wasn’t into this idea at all (fair enough) and was very wriggly and fighting us. I recommended stopping and giving the dog some sedation for everybody’s safety. The vet refused and instructed us to keep holding. The dog threw its head back and hit me full force in the chin. And then everything became quite blurry…

I received a concussion and a whiplash injury. The next couple of months were a real struggle. My short-term memory was impacted; I often found myself wandering in a circle trying to remember what I had started to do. My speech was affected, I was photophobic, dizzy and constantly in pain. My workplace was unsupportive and didn’t want anything to do with my injury. Given that I had no family in Australia, my housemate and my new boyfriend were forced into the role of taking care of me. I made some improvement over time, but then gradually worsened again. I was getting fatigued and experiencing all kinds of weird symptoms like palpitations, severe tachycardia, difficulty swallowing, brain fog, stomach upsets, adrenaline shakes and feeling dizzy, to name just a few.

After about two years of being treated for anxiety and struggling to get through (human) nursing school while pretending everything was fine, I collapsed and couldn’t stand up anymore without almost passing out. I was finally diagnosed with postural orthostatic tachycardia syndrome (POTS), started on medication and was sent to a cardiologist.

My “after.”

I have been living with POTS for about three years now. The new boyfriend who took care of me despite barely knowing me, is now my husband. I am stable on medication and can manage my triggers relatively well, although I definitely can’t stand still for more than a few minutes. I started experiencing chronic pain along with new, extreme fatigue and was recently diagnosed with fibromyalgia also. A lot of my pain seems to be focused on my head and neck, which is where my original injury was. I have a real inability to exercise — I either end up with post-exertional fatigue or get overheated and feel faint.

I have spent most of the last three years mourning and missing my “before” self. This is not something I was consciously aware of, until my work Christmas party at the end of 2020 (outside, socially distanced!). I found myself telling my colleagues about all the hobbies I used to have and showing photos of me doing things like playing roller derby rather than talking about my current self. On reflection, I realized it was time to draw a line in the sand and start accepting my new normal and what it means for me.

In 2021, I am focusing on finding out who I am now and what I like to do. I’m currently working with an exercise physiologist to help increase my activity levels and can currently do a 15 to 20 minute walk and some strengthening exercises on alternate days. It’s a long way from roller derby and CrossFit, but it feels good to be able to move my body in any way at all. I have just started seeing a psychologist to talk through my feelings. I am focusing on new hobbies such as drawing and writing and pulling out old ones like playing the guitar. I play board games with my friends rather than going out at night. I am an oncology nurse and am currently figuring out where my body’s limits are with regards to work. I am not sure my “after” will be a happily ever after story as such, but it is definitely time to find out what it does involve rather than living in the past and holding onto the person I used to be before I got smashed in the head by a dog!

Image provided by author by Phill Northwood

Conversations 17