When you’re living with a chronic illness like endometriosis, COPD or chronic pain syndromes, you probably face limitations on a regularly basis. You can only walk so far before your legs or back give in. You can only work for a number of hours a day before fatigue and pain get the better of you. You can’t handle the stimulation of crowded rooms, bright lights and windy weather for a short period of time before getting a migraine attack or sensory overload.
Living with limitations can feel like a juggling act, worrying about which ball you’ll have to drop and how to keep getting meaningful things done despite your chronic illness. And it doesn’t just affect you, but also the people in your life.
How do you explain to your family and friends what you can and cannot do due to chronic illness? And how do you set healthy boundaries and communicate them to the people around you?
Living with Limitations
Of course it depends on the nature and severity of your health problems, but chronic illness often automatically limits you in what you can do physically and mentally. When you’re in constant pain, feel nauseated or dizzy, it becomes harder to function as you normally would. The limitations of your body and mind can affect your ability to study and work, play sports, raise your family and keep your home tidy. Even something like emptying the dishwasher suddenly is no longer something you do quickly while cooking, but a chore you need to plan and recuperate from.
But chronic illness may force you to actively set boundaries around your life too. Pacing, for example, means you stop activities before you start experiencing (too many) symptoms and take plenty of rest in between. That way, you avoid overdoing it when you feel pretty good, and need to recover for days or weeks afterwards.
But setting boundaries for yourself is not as simple as it sounds. Having to go home when you’re having fun because you know you’ll pay the price later is disheartening. And then there’s the people around you. How do you explain to your loved ones what you can and cannot do due to chronic illness, especially when that changes from day to day? How can your family, friends and coworkers truly understand you’re not picky when you have to adapt plans so you’re able to go along? That it’s not personal when you have to cancel appointments at the last minute or can’t always be there for them as much as you’d wish?
How can you communicate your limitations and practical boundaries in a way that doesn’t hurt your relationships?
When you have chronic Lyme, Hashimoto’s or kidney disease, you’ll probably reach or push limits you didn’t know existed. Not just physical limitations of what your body can do, but you may also struggle with awkward, uncomfortable feelings around your body’s integrity during medical examinations or treatments. And even with the best intentions, the people around you can cross your emotional boundaries by not taking our illness seriously, offering well-meant advice that’s hurtful nonetheless or oversharing personal information with others.
In this article, we’ll focus on setting boundaries around your physical and practical limitations, but some of the advice will also work for protecting your feelings.
1. Understand why you need to set boundaries
Let’s be real: it sucks when chronic illness stops you from living the life you know you could have if only your body and brain would cooperate. So why would you potentially limit yourself even further by setting boundaries?
Pacing is the practice of balancing activity and rest in order to get meaningful things done on bad days without overdoing it on days when you feel relatively good. Recent research suggests that purposely planning how and where you’ll spend your energy on your daily activities can help manage symptoms better, lessen fatigue and increase your fitness.
In that spirit, setting boundaries for yourself, like saying “no” to requests and stopping activities before your symptoms increase, is an important tool to manage your energy and symptoms, engage more in meaningful activities and, as a result, improve your quality of life.
There will always be days when you hate having to take breaks or leave the party early, but knowing how setting boundaries supports your health and happiness in the long run will make it easier to work within your limits.
2. Learn to recognize your warning signs
The next question is, how do you know where to set those boundaries? How do you know you’ve reached your limits – and preferably before you crash from pushing yourself too far?
Your body and brain have an internal alert system, that’ll warn you when you’re running low on resources and reserves. Those warning signs look differently for everybody, but things like lightheadedness, hunger pangs, headache, tense shoulders, irritability and anxiety commonly occur. What’s more, your regular symptoms may also get worse. If you overlook or ignore these signals, your body will start to ‘scream’ louder until you get the message and act on it.
But if you’re dealing with fatigue and pain on a daily basis, it can be harder to sense exactly when you should stick to your activities and when it’s time to stop. In that case, it might help to visualize your body’s alert system as a traffic light.
- Do you feel comfortable in your own skin, with little to no symptoms? Or if you’re chronically ill, are your symptoms mild, pretty ‘standard’ for you, and not threatening your health? You got the green light to be active and tackle your to-do list.
- Are you starting to feel (more) tired and aching? Or is your body sending you other warning signs like dizziness, being out of breath or feeling anxiously confused? That’s your orange light – time to hit the breaks and slow down to prevent ‘crashing’.
- Do you experience intense or severe symptoms, more or different than usual? You’ve run the red light and need to pull over quickly.
Obviously, life is rarely that simplistic, but having an analogy like these traffic lights or the spoon theory can make it easier to notice and interpret your body’s warning signs. And the better you understand your needs, triggers and reactions, the better you’ll be able to manage your energy wisely and get meaningful things done.
3. Set simple rules for yourself
Ok, we’ve been talking about setting boundaries, but what does that actually look like in daily life? That depends completely on your unique situation – your health, your abilities and responsibilities, your social circle. In my experience, your boundaries are partially formed by the dilemmas you keep running into.
Let’s say you’re struggling to stick to your plans because you never know how well or sick you’ll feel on a given day. Chances are, you go back and forth between pushing through the pain or cancelling your plans, while second-guessing yourself and feeling guilty. To make this decision-making process a little easier, you could come up with simple rules of thumb for yourself on what to do in recurring situations. For example:
- “I can say “no” to invitations and requests that aren’t a priority for me right now.”
- “No matter how poorly I feel, I’ll make an effort to attend once-in-a-lifetime events like a wedding. But I plan to take breaks, leave (very) early and how to get home safely if needed.”
- “I will push through certain mild symptoms, but not others (especially symptoms that could risk my safety or long-term health).”
These boundaries can also work the other way around: they can serve as a baseline for you to stick to on bad days. Perhaps you set a rule for yourself that, no matter how you feel, you’ll still walk to the end of the street or cook a healthy dinner or sit outside for 10 minutes to catch some sunlight and fresh air.
But even with the best boundaries, we all know that life does not always go as planned. No matter how well prepared you are, there will be unexpected events that mess up your pacing routines, from moving house and emergency hospital visits to a pandemic. In that case, see how you can best adapt to handle this new situation you’re in. And when you’ve figured that out, make sure to communicate those changes to the people closest to you.
Communicating Your Limitations Kindly
The hard thing about communicating your limitations to the people around you, is that you can’t always see on the outside how somebody feels on the inside. Some people are better than others in putting themselves in your shoes. But even the most compassionate people can’t fully understand what it feels like to be in pain all the time and grieve the life you’ve lost if they’ve never experienced it themselves. When you’re healthy, it’s hard to imagine that something as simple as unloading the dishwasher, making dinner or being in a crowded, noisy room can wear you down to the point of exhaustion.
That’s why you shouldn’t get too upset when well-meaning family and friends don’t always get what you’re going through, and why you should communicate your limitations kindly to help them understand your physical and emotional boundaries. Here are some pointers on how to do that:
1. Explain, but don’t over-explain
How often have you used the chronic illness version of the classic break-up line: “It’s not you, it’s not me, it’s my disease” to explain to your friends and family why you can’t hang out or celebrate milestones with them?
You don’t want to talk about your limitations all the time, but your loved ones should have a general idea of which activities and situations are hard for you. Otherwise, your best friend may think that having a seated dinner instead of bar hopping is a good alternative for your usual night out, because he/she doesn’t realize that sitting up in hard chairs or having conversations in the middle of a crowded restaurant is still (too) taxing for you. For many healthy people, it doesn’t come naturally to consider mental fatigue and sensory overload when making plans, just like the effort it takes you to simply leave the house and get somewhere.
People can’t magically guess your limitations and boundaries if you don’t tell them. By presenting your practical limitations as a fact, not as a ‘complaint’ or an ‘excuse’, you can start brainstorming solutions that will work for both of you.
2. Less “sorry”, more “thank you”
Do you feel guilty for not being able to simply accept fun invitations without modifying the plans so you can join too? Please don’t.
Think about it: If one person constantly worries about letting the other one down, it changes the dynamics of the relationship. And that would be a shame, because no matter how sick you are, you can still bring love, support, meaning and joy to your friendships and family bonds in your own way!
One way to navigate this ‘spoonie guilt’ without selling yourself short, is by saying “thank you” instead of “I’m sorry”. Thank your loved ones for being flexible, patient and understanding, instead of constantly apologizing for setting healthy boundaries. Of course you should try to understand your mates and relatives’ point of view too and say you’re sorry when you’ve hurt someones feelings, but don’t over-apologize for an illness that isn’t your fault.
Showing your appreciation instead of feeling guilty will not just affect your relationships in a positive way, but also how you see yourself.
3. Get comfortable with saying “no”
Even if you’re used to it by now, it’s painful having to decline invitations or requests because you know you probably won’t be able to show up. Still, you might hesitate to say “no, sorry”, because you hate letting people down, or worse, fear you will not get asked anymore for the next event. But creating false expectancies doesn’t work either – everyone will only end up disappointed.
Having rules of thumb for yourself will make your decision process a lot easier, but not necessary the actual saying “no”. Here are some ideas to politely say “no”:
- Ask for time. “Let me think about it and I’ll get back to you on [day].” This phrase helps if you need to figure out the if and how, but don’t use it when you know in your heart you won’t be able to say “yes” in the end. That only postpones the inevitable letdown.
- Offer a doable alternative. “I’d love to come/join/help out, but my health won’t let me. Perhaps we can do this instead?”
- Simply “no”. “Thank you so much for the invite/offer, but sadly I can’t make it.” (And then don’t start over-explaining or over-apologizing).
Unfortunately, not everyone you meet will react kindly when you communicate your boundaries. Thanks to a growing number of life coaches, there’s a mentality that you can do anything that’s really important to you, everything else is just excuses. This gives many people the impression, that if you say “no”, they or their event doesn’t matter to you, turning your decline into a personal rejection instead of a physical limitation.
But anyone who’s faced major hardship knows that there are legitimate reasons for not being able to stick to your plans. That doesn’t mean you should adopt a victim mentality, of course not. But you don’t have to tolerate people looking down on you and stepping over your boundaries either. When others do not respect your limitations and boundaries, remember “no” is a full sentence. You don’t owe anyone any explanation they’re not willing to except gracefully.
4. Remember, other people have boundaries too
When you have a chronic illness that influences every aspect of your daily life, your own limitations may be on your mind more often than you’d like. It can be easy to forget that even that healthy people have their own boundaries too.
Your partner, roommate or coworker also have a busy schedule, a demanding job or kids that keep them up all night. Sometimes, their flexibility is limited too, and you shouldn’t take that personal. Try to put yourself in your friends’ and family’s shoes too.
There’s no need to overthink setting and communicating your boundaries, and you don’t want to become bossy or distant either. But when you’re struggling with how to explain your physical and mental limitations to the people in your life in a way they can understand, without feeling guilty or unworthy yourself, the steps above are a good place to start.
When it comes to living with limitations, what helps you to set healthy boundaries and communicate them kindly?
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