Time Spent Managing My Health: An Investment That Comes With a Price

By Julie Vallortigara

3 min read

I recall filling a survey on this website and answering a question about the amount of time I spend managing my condition. That made me realize how much time I do that every week! I evaluate that I spend between 15% to 20% of my time doing something towards my health with the intention to manage better my AxSpa.

What I do to manage my condition

I exercise with other people with AxSpa, walk every day, shop wisely and load my diet with anti-inflammatory ingredients and recipes, try to perfect my bed time routine so I can sleep well, call various doctors and book appointments, revise my treatment, look after my mental health by meditating, journal and do creatives activities, manage flares and injuries, reflect on and improve my self-care routine, etc. I could carry on as this list keeps being updated with experience and practice.

So, do we ever get that time back?

I know the answer, and I feel like moaning a bit about it because that frustrates me. I mean, that is time that we don’t get back to use on something else. On top of that, we might spend more time doing certain daily tasks. Early this year I made myself a timetable to organize my week so I would get my studies in coaching finished on time. I have worked part-time aside from studying because I need to earn money to transition to my new career, which I am passionate about and which suits my needs living with AxSpa and fibromyalgia.

Well, when I finished my timetable fitting my work, my studies, and my self-care, then I realized that I was basically very busy managing my conditions (luckily the management of AxSpa and fibromyalgia is similar) and working. I barely have time to clean my flat and look after my place, to call my friends, and just have some free time to do nothing...My management is working so I guess that motivates me to carry on and I feel empowered in being able to help myself. But really, if I am being honest here, that’s not fair is it?

I was talking to my neighbors the other day. I told them that I estimate 15-20% of my time is dedicated to managing my conditions and that can include actions as well as reflections, planning, thinking, all the things related to AxSpa which take my mental space as well as keep me physically occupied.

My neighbors were very surprised and said that is A LOT OF TIME in a lifetime doing that, aside from chores, duties, good things, and fun activities that life is offering to us. And of course, in a moment of struggle, a flare, a new symptom, then this figure of 15-20% suddenly rises and takes over the rest of our life plans.

It's not fair

So no, that’s not fair that I am lacking time because the management of my AxSpa is time-consuming. It’s not fair that it’s not acknowledged in our society that this time investment prevents me to work full time, to get going with my chores at home, to have the leisure time that I need and deserve, to stop worrying about the money at the end of the month because with part-time jobs sometimes money is tight.

I am committed to live better with my condition, I have educated myself in the management of AxSpa and I am in a right place now. I am however frustrated by the fact that I have to fit everything related to my health in my life to answer my needs on top of what people without a condition daily do.

I still have many dreams, ideas, and projects bubbling in my head about things I want to learn, to do, to build. I am a positive and optimistic person, so I see myself getting these done in the future. But my frustration often shows up and tells me that I will need several lives!

I am curious to know how you feel about the time you spend on managing your condition? How do you balance your time on AxSpa versus time living your life?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Rebecca C Moderator & Contributor
Doctors, medications, imaging, labs, infusions, sleeping. I feel so overly consumed by treating and managing AS. It takes up at least 60% of my time. Sad ~ Rebecca 
1. Nicky Flikas Moderator
 @Julie Vallortigara The time we spend on managing AS is crazy. Like Rebecca said counting the all the doctor visits, the medications we need and change so many times, labs, imaging, the costs of biologics itself and not to forget days of missing work because we are unwell or for medical appointments. It can feel very time consuming just that alone. I feel sometimes there is not enough time in a day, if that makes sense. Really enjoy your article. Wishing you well, Nicky
Anna Samson Moderator & Contributor
Everything you've said rings true for me! I also have AxSpA and fibromyalgia and until reading your article, I did not realize how much of my life is dedicated to managing my conditions. That is time that is taken away from other important things in my life. While it is very important to try and do what we can to manage our symptoms, I hear you when you say that it feels unfair. Sometimes I feel like I have to let go of my dreams and desires to manage my health better but that's not fair either. I feel I have just now begun to better manage my time when it comes to disease management and all other aspects of my life. It's a learning process and I'm glad to know I am not alone in this struggle.
James Hollens Moderator & Contributor
Hi <inline-mention username="Julie Vallortigara" user-id="2107984"/> It really is crazy when you realise just how much time we have to put into keeping our conditions under control. It is even more shocking when you realise that this condition actually makes it harder to do the things that we enjoy in life thanks to the fatigue and brain fog. I dread to work out just how big the percentage of my time is spent doing things to help my condition. Although I am trying a bit of a health push at the moment so I try and incorporate my stretches with a work out and add anti inflammatory ingredients to my post work out meals. Thanks for a really interesting read! All the best, James (Community Member)