"Managing My Health Is My Second Job": What It Cost Me
By Stephanie Moore
Endometriosis is the full time job you can’t quit, the one you don’t get paid for, the that YOU pay for. Sometimes it’s your second job, for others their only job, because the strain of endometriosis can be profound enough to cost you your ability to work consistently or at all. It can be tiring engaging in the work of finding specialists and team members, managing new symptoms, and coping with unexpected flare ups. It’s not just money - it’s time and unpaid labour too. In this blog Stephanie Moore shares her experience of endometriosis, and her own personal cost, which is so much more than money.
Managing one’s health can be a costly and timely endeavour, heavily influenced by individual means and societal availability. When considering the cost of health care and what is reported through statistics and other outlets, it often focuses on the monetary loss to individuals and/or the government. Cost however, does not always refer to monetary value of goods and services. It can incorporate anything the requires the subtraction of one thing to gain another (e.g. time, energy, autonomy, emotions etc). Just like seeing different specialists can incur fees of different amounts, no two individuals will experience the same level of non-monetary loss as another. The spoon theory is one such example to explain cost that is non-monetary in nature, but the personal loss of daily energy to complete daily tasks. Each task requiring a different number of spoons until all personal energy is used or even overspent leaving the individual worn out or exhausted. These costs can leave an individual in debt to themselves, affecting how they will feel and manage subsequent days and activities.
Managing conditions, such as endometriosis, are comparable to having a second full time job (if you currently already have a paying full-time job, otherwise it is your full-time job). It is a thankless job, filled with booking and attending appointments, along with the emotional rollercoaster of hope, sadness, and loss around being heard and taken seriously in your journey for answers about what you are experiencing. The appointments can range from a simple conversation consultation to intimately invasive procedures that are difficult to feel comfortable during. All of which require available time and energy to attend, and if you have been to a few different appointments with no improvement, energy can become seriously lacking. Seeking help at any stage on the road to answers and recovery can become taxing on one’s emotional wellbeing, as well as limiting time available for the other requirements and responsibilities in life.
When I initially realised that something was not quite right with my health, I was working full-time.
It is hard trying to seek help while managing full-time hours. You cannot simply leave whenever you need to attend appointments because you are contractually obliged to be at work during your agreed upon hours. Appointments were carefully organised to fit in around my “normal” schedule to not draw attention to what was going on in my personal life. I would often attend after hours GP clinics for advice and referrals, which meant you did not always see someone who knew enough about the female reproductive system aside from prescribing the contraceptive pill. I would often attend blood tests either before work or during lunch breaks, and then subtly try to hide the cotton wool ball stuck to my arm either by wearing a jumper and crossing my arms. I find attending those tests to be ironic considering I used to hide my immunisation forms from my parents because I was terrified of needles. Ultrasounds on the other hand required more thought around appointment times due to the time they took. To navigate around this issue, I would book them near lunch time when I could use my break to sneak away from the office, or after work before heading home for the day. Trying to juggle a full-time job and seeking help often resulted in conflicting schedules and emotional exhaustion.
The endless negative results with no reasonable answers to my abnormal symptoms had me seriously doubting why I continued to attend these appointments. It felt like the definition of insanity, “doing the same thing repeatedly and expecting a different result”. I withdrew from my partner, becoming a shell of who I once was. Struggling to articulate what was going on because I was conflicted by what I was experiencing and the doctors telling me that I was by their definition “fine”. I began operating purely on autopilot and strict schedules to get through the day and protect my emotional state. The result before being diagnosed through laparoscopy surgery was increasing amounts of pain, and a fragile and damaged psyche.
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