The Hidden Costs of AxSpA
Cost (noun): something that is given, needed or lost in order to get a particular thing.
Living with AxSpA comes at a cost.
The explicit costs of living with AxSpA are obvious. Doctor visits, consultations with other specialists, medications, and other essential aspects of living with this disease cost money, even though for me much of this is covered and doesn’t come out of my pocket.
There are also secondary financial costs that I account for in order to decrease the pain and increase my functionality in my day-to-day life. I bought an ergonomic chair for the office, better footwear to increase support, a heating pad and ice packs to name a few examples.
Since my diagnosis, my expenses have unquestionably increased.
Yet, the costs I find the most challenging to cope with are not monetary. For all added expenses, the solution is a simple principle: increase my income to cover the costs.
For the non-monetary costs, the solutions are not as simple, and they are something I am constantly trying to develop new ways of approaching and managing.
Time is constant and one-dimensional. I’m unaware of the duration, but my time in this world is finite. I can’t get it back and it moves ahead at the same pace regardless of how AxSpA may impact my day.
This is the aspect I have the most difficulty coping with. Whenever I’m mired in a flare, I feel it has cost me time and there is no known way to earn it back. Every minute spent managing AxSpA is a minute lost to the disease.
Time management (read: procrastination) has not always been my forte, but AxSpA has forced a new perspective on it.
Feeling well is exponentially more valuable now. I can’t waste it because the next flare is unpredictably around the corner and will eat up the minutes I thought I had left in the day.
My new approach to time and a schedule is not always to organize things by the minute, but by how I’m feeling. At some point in my day or week I will need time to manage AxSpA, but there’s no secretary to book that appointment. Some days all the other tasks will need to fit around managing my symptoms.
No, sorry I can’t make it today.
I hate saying that but it’s become a regular part of my routine. I am a social butterfly. I love being around people, doing things, being part of the fun. AxSpA does not. AxSpA sends me to bed early, wakes me up at weird hours, and will sometimes show up unannounced.
Sometimes it feels like all I do is opt out of invitations.
It impacts the people closest to me a lot too. I’m thankful for them but when flares occur intimacy and vulnerability is difficult.
When symptoms flare up the worst, people get this look. It’s a mixed look of sadness and sympathy which comes from a place of love but I can’t stand to see it. I know they want to help but they can’t and it can be very awkward and challenging on the worst days.
People are generally respectful and understanding, but for me I withdraw and remove myself. Solitude can be more comforting in the challenging moments but it certainly puts a strain on relationships to do so.
Quality of life
This is one cost I will fight until the bitter end.
If the idiom is true that life will throw me curveballs, this feels like a called strike that bounced in the dirt.
So, it’s time to choke up, shorten my swing and foul the next one off.
I will not give up what I love to do. I will continue to adapt and pursue my passions.
I only get one chance at it, so I’m going to live my best life and AxSpA better buckle up for the ride.
Can you tell when a flare is coming?