Lost and Gained: Heather

By Heather (she/her)

Listen to it here: https://open.spotify.com/episode/5U0hY5M7zPEYzFfqEJIZMS?si=6b5aa64ce1c64854

Hi, Heather here. This week we are all talking about what we have lost and gained through our experiences of ill health. Some of these might be focussed on positive life choices, but not mine.

Background I was diagnosed with Lupus (SLE) almost exactly 7 years ago and despite numerous severe flares (and multiple weeks of sick leave) I have managed to keep my life moving generally forward throughout that time. This was largely due to getting the right combination of medications and balancing my work and life. I had a civil service career for 7 years, completed my degree and diploma part time in the evenings, bought a house and somewhere along the way got married (with an adorable puppy thrown in!) In summer last year I started my new dream career as a trainee lawyer and after about 2 months I very quickly took unwell. We are still trying to put the pieces together of what happened. I suddenly started experiencing very strange cardiac symptoms including severe dizziness and fainting, migraines causing partial vision loss, and then repeated infections that were multi antibiotic resistant. This lead to 4 unplanned hospital admissions in the space of 2 months.

Lost

So what did I lose? After 6 months of being with a very understanding employer I lost my dream job in February 2020, although I can return once I’m better. This has meant a sudden loss of the steady income we had grown used to, but more important than financial stability, I lost my identifier. We all have identifiers that we use to describe ourselves. It might be our: gender, relationship status, employment status, family role or political / religious beliefs. We all have our own order in which we prioritise these identifiers. For me, being employed in a job I valued was always a key identifier. I was proud to work for the civil service and equally pleased to be studying law. I thrived in conversations about either and was quietly proud of what I had achieved despite my medical conditions. When I lost my job it was that loss of self worth that I struggled with most. I still struggle when strangers ask me what I do for work, because I feel so conflicted. I don’t want to say I’m unemployed because of the stigma attached, but equally don’t want a long discussion about my illness with a complete stranger. I keep coming up with cutesie answers about having a “career break” or “having some time off” but they taste bitter.

It’s not so much that it matters what they think, but more that it matters how I view myself. Being at home all the time is hard to mentally adjust to, but slowly with a new routine, I’m getting there. The biggest loss has been of my “identifier” and the clarity of how I view myself in light of that.

Found So what did I gain? This is going to sound extremely backwards so please bear with me. I gained the ability to pause my life.

My entire life has been very target driven, with every achievement being clouded by my next goal. I mentally thrive under that constant need to better myself, but my body does not. It has often hit me with a lupus flare to get me to slow down. Even in the weeks before this recent medical episode, I felt unfulfilled despite meeting so many personal goals. In December I had an especially bad infection that landed me in hospital for a week, with daily infusions for another week thereafter. When my first symptoms appeared I disregarded them because I had gotten quite used to knowing where my bodies limits are. I didn’t think these symptoms were urgent and thought it could wait until the GP opened in the morning. I was wrong. Within half an hour I was going in and out of consciousness while my husband was being informed by the emergency responder that the ambulance wasn’t going to make it in time before I went into a coma. I ended up injecting myself on my bathroom floor, and was later told that it probably saved my life. Initially it didn’t mean much because I was too busy fire fighting my health. As the days and weeks have gone on, I have processed it more and the knee jerk emotions have subsided (although I still can’t lock my bathroom door). What hasn’t gone away is the feeling of hitting pause on my life. I appreciate that my life will probably back to normal one day and all this will be period to look back on. At the moment though, I have at least a few months to just pause. I have very few worries about when and how I am going to go back to work. I’m feeling generally calm about just taking it one day at a time. I didn’t cry when I could hardly leave the house for weeks because my health was simply more important than my goals (for the first time ever). I bought the things I hadn’t been able to justify buying, just because. I spent days just curled up with my husband watching netflix and scrolling Tik Tok. None of this is bucket list stuff, but for now at least, it is enough. It is enough to be breathing, experiencing the little things in life and enjoying the moments with loved ones (even remotely under the current self isolation).

I’m happily building up my strength with daily 10 minute yoga workouts, doing my skincare routine and sewing. I don’t currently feel like I have anything to prove. I’ve hit pause on the daily drama that it’s so easy to get lost in, because it honestly doesn’t matter right now. My life is enough for now, and that’s the best gift I could ever be given.

(Originally published 29/03/20)