If society occasionally, not often enough, acknowledges the additional workload women often shoulder at home, the silent, unseen workload of managing a chronic illness for anyone gets even less attention. This is also understandable, as managing a chronic disease is the hidden face of the iceberg: beyond the visible symptoms, there’s a hidden layer of responsibility that few that are not affected truly recognize. From managing symptoms and energy levels to the maze of medical care and administrative tasks, a chronic disease involves a continual balancing act, a constant commitment to keeping life as smooth as possible despite the daily challenges.
Managing the symptoms and your energy levels
First and foremost, living with a chronic disease means managing not only symptoms but also the energy levels and their impact on your daily life.
Some days start with a sense of heaviness, where moving feels impossible and legs feel like lead. Other days, I wake up feeling unexpectedly strong, capable of walking and even managing small tasks without much effort – at least for a while. But then there are those other days when even the short walk to the bathroom feels as daunting as an Ironman challenge. On those days, simply arriving at the office becomes an accomplishment, a small triumph of just getting there. And on those days, well-meaning comments like “You look well!” can be particularly hard to hear when I’m barely able to stand, much less walk.
Anyways on the really tough days, work happens from bed – because there is no other choice. Sometimes, concerned colleagues remind me to take it easy when my symptoms are visibly worse, despite my determination to carry on.
Managing energy with a chronic illness means constantly questioning: Will I be able to do this? Is it worth the energy it will take? Here are a few strategies I’ve found helpful in maintaining some balance:
- Prioritize activities that matter: Not every task or activity is equally important, so it’s essential to reserve your energy for what truly matters to you. I try to always prioritize what brings me the most fulfilment (even if it does not always work).
- Be prepared to adjust plans: Some days, symptoms or fatigue may demand that you abandon or alter your plans. Stay flexible, and remember that adapting is a strength, not a setback. This approach is my preferred go-to option, as I still struggle to take genuine rest unless I have no other choice. I know it would be wise to rest before I truly need it, but I’m still working on that.
- Educate your support system: Talk openly with friends, family, and colleagues about the reality of living with fluctuating symptoms. Helping them understand the challenges of managing energy can lead to better support, even if it is not always easy to do talk about it. Even though it has become easier, I still have a hard time acknowledging my weaker moments at work.
Managing medical care
Managing a chronic disease also means making sure you are taking care of yourself medically.
Even with experience—and yes, experience does help—the mental burden remains. Beyond the symptoms, it can really be a pain in the ass.
As much as I know this is not helpful, it’s not uncommon to have inner monologues like these:
- “Oh no, it’s already Friday. How am I supposed to fit in my weekly nine subcutaneous infusions? There’s just not enough time left. Well, I guess I’ll have to double up next week. Not the first time. Speaking of which, do I even have enough supplies? Or do I need to order some more? What about the infusion bottles? And the other medications? Do I need some prescriptions?”
- “I should really call at the hospital to get on the waiting list for my next check-up appointment. Hopefully, it will not take too long for them to give me that appointment. Then there’s the bloodwork—I’ll need to arrange that beforehand. I’ll call my GP about it too.”
- “Ups, forgot to take the 14:30 medication…No wonder, I have been feeling sluggish for the last hours…Good, this does not happen too often.”
You just never have a break from organizing your own medical care, and that’s what’s truly tiring. Sure, I’ve become quite skilled at organizing over the years, but sometimes, I just wish I could take a breather from it all.
In addition to the tasks you can manage from home, there are also times when you obviously need to physically go somewhere – a hospital for a check-up, a physio appointment, or even the pharmacy. Which obviously means going there, sometimes waiting a bit, sometimes going back if you have follow-up bloodwork or need to retrieve medications that weren’t in stock (which is always the case for mine).
Over the years and after trying many different things, I have developed some strategies to manage my medical care:
- Build a trusting relationship with your healthcare team: Find healthcare providers (doctors, physio, etc.) you feel comfortable with. This makes a huge difference!
- Stay organized: Create a simple system to manage appointments and medications. Enter reminders in your calendar for appointments, prescription renewals, and ordering materials. Some apps can do that, I prefer to use my GoogleCalendar to do it.
- Prepare for appointments: Before each appointment, reflect on what happened since the last time you saw the doctor or physio. Note down questions or concerns about symptoms, treatments, etc. and be clear on what you want to achieve during the appointment, what the outcome should be.
Managing the administrative aspects
Although administrative work doesn’t directly impact the disease itself, managing these tasks is a crucial part of living with a chronic illness, as it will give you access to financial and material support. As the happy beneficiary of the Austrian public health insurance, much of the process is simplified – most of the time, I just present my e-card (Austria’s public health insurance card), and all necessary costs are covered immediately.
However, there are times when I need to pay upfront and submit paperwork for partial reimbursement. And though it’s less frequent now, there was a period when I (or my Mom) had a substantial amount of disability paperwork to handle to ensure I received the financial and material support I was entitled to, support that made a real difference.
These days, I try to keep up to date with the changes in disability support and in tax deductions, which can be quite substantial when you have a disability.
Here are some strategies I’ve found helpful for managing the administrative side:
- Don’t hesitate to ask experts for help: Be it social workers or associations advising people with chronic diseases or disabilities, do not hesitate to ask for support when it’s available. It was a huge help for me in the first years.
- Create a filing system: Keep a dedicated file with all relevant medical records and administrative documents. This will make it easier to locate anything you might need quickly.
- Set aside regular time for administrative paperwork: Schedule a weekly or monthly time slot to tackle the administrative work in one go, helping you stay on top of it without feeling overwhelmed.
Managing a chronic disease may not be a conventional full-time job, yet it is an ever-present responsibility. For a long time, I underestimated the mental workload it truly involves. Beyond the symptoms, there’s a constant layer of planning, organizing, and adjusting that can be exhausting. Each day brings new choices and compromises, often requiring a careful balance of energy, treatment, and resources.
Thankfully, a solid support system (for which I’m very grateful) and a generally positive mindset (even if I have more difficult days as well) have helped me navigate the demands of chronic illness. These allow me to find solace in the small victories that make each day worthwhile.
Picture by Matteo Vistocco on Unsplash