“I’m Diagnosed with a Chronic Illness; Now What Do I Do?”
It’s the question everyone with chronic illness has probably asked themselves: How can you still get things done when you’re dealing with debilitating symptoms?
Not only do chronic pain, fatigue and brain fog make it challenging to perform your daily tasks, you’re also faced with unexpected events like hospital visits and flare-ups on top of that. One overall strategy to overcome these obstacles is to simplify your life.
Simplifying your life involves focusing on what matters most to you and reducing less important activities, belongings and distractions. You can also free up time and space by making certain routines and habits less complicated. Depending on your personal situation, that could mean pairing down your to-do list, decluttering your home or designing a capsule wardrobe.
When you’re chronically ill, simplifying your life could help you to save energy in the long run, for example by working with a meal planning template to make dinnertime more effortless. Instead, you can spend that energy on what truly matters to you, like quality time with your loved ones or working on a fun project.
Mentally, you may feel less overwhelmed and more in control. And even more important, you might be more content with your life now that you’re able to focus a little more on the people and activities you enjoy the most.
In this first part of a series on simplifying your life with chronic illness, let’s look into 7 general strategies you can apply to make your days run a little easier.
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1. Get clear on your priorities.
When you’re living with pain, fatigue and limited mobility, you have no other option than to be purposeful with how you spend your precious energy. No one can do it all, but setting priorities with chronic illness often means that you have to make hard choices on a regular basis.
It’s not about saying ‘no’ to more commitments and fun activities, but having to decide whether to go to therapy or to make dinner; to see your kid in the school play or not being able to get out of bed for the next two days – and all the practical problems that brings.
Learning how to set priorities when you’re chronically ill deserves an entire blog post dedicated to this issue – and one day I will write that – but for now, here are a few questions to ask yourself:
- What are the few areas of life that matter most to me? Think of family, friends and pursuing your passion, but also values like maintaining your independence, practicing your religion or self-improvement.
- Which people do I care about the most? Who do you love? Who’s company do you enjoy, and who brings out the best in you?
- When I get to the end of my life, what do I want to look back on? Which achievements would you love to be able to list? What would you regret no having done or tried – even if it had to be in a modified version?
- What are your non-negotiables in your daily life? For example, no matter what’s going on in my life, I know that I’ll be able to function much better when I can get enough sleep, take a warm shower at night, eat nourishing meals that I enjoy, and spend 10 minutes outside during the day. What do you need to feel like yourself?
The answers to these questions will be different for everyone. But getting clear who and what you’d most like to spend your time and energy one is the first step to uncovering how you can make that happen despite your health problems.
2. Make easier decisions with ‘rules’ for yourself.
You know that every day the question of ‘what’s for dinner?’ will pop up. You have to put on a fitting outfit each morning, clean your house regularly and buy gifts occasionally. What’s more, you’ll probably have to deal with ‘spoonie dilemmas’ once and a while, like deciding whether you should push through the pain to pursue an activity or commitment, or that it’s better to cancel and rest.
Instead of overthinking your options every time or feeling mentally overwhelmed, follow author Kendra Adachi’s example and decide once. For all those recurring events in your life, set some ‘rules’ for yourself. For example:
- Set your own food rules. Enjoy Taco Tuesdays, have a salad as a starter whenever you eat out, or prep a batch of overnight oats for weekday breakfasts on Sundays. You could also limit temptations by making a rule for yourself that you’ll only eat potato chips or ice cream on the weekend, or drink water after each glass of alcohol.
- Design your own ‘uniform’. Like Barack Obama only wore gray or blue suits during his presidency to reduce decision fatigue, you can have a go-to outfit that you can turn to. Whether you like a t-shirt and midi skirt in Summer, a knit jumper on jeans in Winter, or comfy loungewear all year round, you’ll reduce your mental load, especially if the separate pieces of your uniform tend to combine well.
- Have a plan for how to organize your life. For example, where do your incoming mail, bills and important documents go? Setting up some sort of system of how to organize your life admin will save you precious time when filing your taxes, updating your insurances or keeping track of medical records.
Having rules for yourself doesn’t mean that you can never change your mind or do something spontaneous. It just helps your body and brain to save some energy most days by acting on auto-pilot, through habits and systems that you’ve consciously chosen to implement.
3. Ask yourself the Magic Question.
In her bestseller book The Lazy Genius, Kendra Adachi invites us to “tend to the necessary before it becomes urgent”, by asking the Magic Question: What can I do now to make life easier later?
If you think ahead, which simple actions could you take now to set yourself up for success later? Here are some ideas to get you started:
- Pack a small toiletry bag with essentials ready to grab if your illness comes with unexpected hospital visits.
- Stock your freezer with a few healthy meals for the inevitable times that you’ll be in too much pain to cook.
- Buy some crowd-pleasing gifts if your fluctuating energy makes it hard for you to get presents closer to birthdays or other celebrations.
Sometimes a little preparation is all you need to prevent stress and overwhelm in the (near) future, while still sticking to habits, rituals and personal values that are meaningful to you on tiring days.
4. Master the art of pacing.
Getting things done with chronic illness always starts with mastering the art of pacing. Pacing refers to managing your (limited) energy wisely, by alternating activity and rest, or switching between physically and mentally-demanding tasks.
It’s tempting to do too much on days when you finally feel relatively well, but so many of us have to pay for it afterwards with post-exertional malaise or a worsening of symptoms. By pacing your energy you avoid (some of) these push-and-crash cycles, which makes your days a little more predictable and therefore simpler to manage.
The reverse is also true: by focusing on the things that matter to you and removing the ‘excess noise’ from your life, it gets easier to rest up before and after activities and to avoid rushing and exhaustion.
So when you’re planning your days, accepting invitations or starting new activities, take the basic of pacing into account to make everything run more smoothly.
5. Single task.
With distractions everywhere all the time, it’s getting harder to focus on the work that’s right in front of you. But studies keep showing that interruptions and switching between tasks takes up much more mental energy and time to get back on track than most of us realize, namely 23 minutes and 15 seconds on average.
So try to single-task when you’re doing jobs that require your full attention, like knowledge work from home, studying or doing life admin. Focusing on one task will let you get more done in less time. You can successfully multi-task when you combine low-focus physical activities like folding laundry or doing dishes with easy mental activities, like making phone calls and listening to audiobooks.
6. Practice a slow yes and a quick no.
When you’re considering taking on new commitments or activities, remind yourself of this advice from Greg McKeown, author of Essentialism: “We need to learn to practice the slow yes and the quick no”.
No matter if you’re afraid to disappoint others or you tend to respond enthusiastically to every invitation that comes your way, be mindful before you say “yes” to avoid spreading yourself too thin or having to cancel last minute because of your health. And given your limited energy, saying “yes” to any activity or request automatically means you’re saying “no” to other things – even if you haven’t realized that yet.
So instead, keep in mind what matters most to you (see strategy #1) and take a look at how you’ll be able to pace your energy before, during and after that meeting, activity or commitment before agreeing to it.
As hard as it is, it’s better to clearly decline the offer or invitation immediately instead of being vague. You can even practice some kind and polite ways to say “no” if you struggle with coming up with a good reply on the spot.
7. Set boundaries.
If you want to simplify your life with chronic illness, you have to set boundaries for yourself.
First of all, communicate your physical and mental limitations kindly but clearly to the important people in your lives. That could save you both a lot of frustration, disappointment and misunderstandings. It’s also perfectly fine to let others know how you’d like to be treated, as well as protect your (emotional) energy around energy vampires, drama seekers or people who question your health problems.
Secondly, have some rules for yourself to reduce the incoming flow of stuff entering your home. For example, keep your wardrobe, bookshelves or toy storage organized with the “one in, one out” principle or a no-buy month. Stop unnecessary (e)mail from coming in by unsubscribing from newsletters you don’t read or placing a “no junk mail and folders” sticker on your mail box. Decide what ‘enough’ looks like for you.
By taking small preventive steps you’ll hopefully won’t have to do a big, time-consuming, declutter session every season.
Now that we’ve covered some general strategies on how to simplify your life with chronic illness, next time we’ll get into practical tips on how to look after yourself, your home and the people and activities in your life despite your health problems.
What helps you most when it comes to simplifying life with chronic illness?
