An energy-limiting chronic illness refers to a condition that significantly restricts an individual’s physical and/or mental energy levels over an extended period. There are many different energy-limiting illnesses. They encompass a range of conditions including Chronic Fatigue Syndrome, Fibromyalgia, Multiple Sclerosis, Lyme Disease, Lupus, POTS, Endometriosis, and Long Covid. Managing daily life with such conditions can be challenging, especially in a society that often demands constant activity and productivity.
Energy impairments exist on a spectrum. Individuals can range from being completely bedridden to seemingly totally fine, even if they’re struggling on the inside. For some, things like having a traditional job or taking part in social activities are impossible due to how much energy basic tasks take.
I struggle with limited energy due to my gastroparesis and malnourishment, which can take months to recover from once you start getting proper nutrition. Proper nutrition is essential for the body to function. As such, when you’re not getting enough nutrients, it can lead to fatigue and decreased energy. It can also lead to decreased muscle, impaired cognitive function, and a weakened immune system, which can all lead to persistent fatigue and lethargy.
Research on Energy-Limiting Chronic Illness:
In April 2021, the Chronic Illness Inclusion Project released a report based on their study into social inclusion, employment, and social security for people with disabilities with energy-limiting chronic illness (ELCI).
The report states that one in three “disabled people of working age in the UK” have an energy-limiting chronic illness, but that “employment and social security policies and systems have not considered or been designed for the particular needs of this group of people”. The report asserts that people with energy-limiting chronic illnesses form a distinct sub-group of people with disabilities. It states that “[t]his group has remained hidden within disability-related policies because their lived experiences of illness and impairment are widely misunderstood and often discredited, denied and disbelieved”.
“The consequence of this is disability assessments that fail to account for impairment with chronic illness; a social security system that is disabling rather than enabling; and a lack of appropriate support and adjustments in employment”.
Those with energy-limiting chronic illnesses must ration their energy to avoid worsening their symptoms. Their daily routine revolves around the goal of pacing and conserving energy. Unfortunately, this is extremely difficult in a society that revolves around one’s productivity, with limited assistance to those who cannot participate in society through the traditional workforce. Dealing with these types of long-term health conditions often requires huge lifestyle changes and a lower activity level that healthy people can’t even fathom. Energy limitations can lead to mental health issues, cognitive dysfunction, inability to seek health care, and a lack of emotional support from others.
Pacing:
As such, if you have a chronic condition, you have to learn to pace yourself. Pacing is a technique used to pace out how much energy you use in a day, and it’s a difficult skill to develop. The three main elements of pacing are breaking up large tasks into smaller ones, taking frequent short breaks, and gradually increasing the amount of things you do and energy you use.
Pacing is difficult because you will always want to do more. But, it’s a crucial aspect of adapting to an energy-limiting chronic illness. Living with an energy impairment means having a limited amount of energy every day, and even small activities can be exhausting. Your energy reserves are drained by both mental and physical tasks.
For people with chronic illness, even the most basic tasks can lead to exhaustion, like getting dressed, feeding yourself, or taking a shower. Even things that are usually restful, like reading a book or watching TV, can use up inordinate amounts of energy, as many with energy-limiting illnesses also struggle with sensory sensitivity and cognitive fatigue.
Not Pacing Yourself:
If you surpass your limits by exerting too much energy, you may have to ‘pay it back’ later. It can worsen your symptoms or trigger a flare of your illness, putting you in an even worse situation. This is sometimes called ‘post-exertional malaise’, where you feel worse after exerting too much energy. If I do something fun on Saturday, I know that I need to spend all of Sunday recovering.
This is the hardest part. Even things that I really want to do – things that are fun and should be restful – can be exhausting. Talking to friends, watching TV, or going for a walk to get a coffee, can require hours or days to recover from. So, I’ve had to learn how much I can do without wearing myself out. At first, it was very short outings. Literally just sitting in my backyard for a few minutes at a time. Then, I moved on to 5-minute walks. Then 10-minute walks. And so on.
Navigating Life with an Energy-Limiting Chronic Illness:
Here are the best tips I have learned over the past year on dealing with an energy-limiting chronic illness.
Avoiding Uncomfortable Situations:
What has helped me most is learning how much energy I have and how much energy each task takes me. I try to avoid things that I know will be really draining as much as possible. For example, I don’t go to events that are going to last a long time. Or if an event is going to be very long, I commit to only going for a few hours. This can be really difficult if I’m having a lot of fun and want to stay longer because I know it’s in my best interest to leave while I’m still feeling well so that I don’t need to spend several days making up for it.
I also avoid going to outdoor events when it’s really hot or really cold out. I’m not able to drink a lot of water, so I’m very susceptible to dehydration. Once I start feeling physically uncomfortable, it can take a long time for me to feel normal again. It’s also harder for me to regulate my body temperature, so I can get really hot or really cold easily, and it takes a while to get back to a comfortable temperature.
Scheduling Plans Strategically:
Another way I manage my energy is by rarely going out during the week. I do this to ensure that I am not too tired for work the next day. If I have to do something during the week, I plan it for a Thursday or Friday so I don’t wear myself out near the beginning of the week. If I am planning on going out or doing a big activity, I strategically schedule it for a Saturday so that I have the next day to recover if need be. And I try my best not to overcommit myself to activities that I may not be able to do. I incorporate a lot of rest and recovery time into my schedule, which also helps me enjoy activities more as I know that I have time set aside to recuperate after.
Prioritize Tasks and Establish Realistic Goals:
Prioritizing essential tasks is also key to coping with an energy-limiting chronic illness. I make a list of the things that I have to do. Then I break them down into smaller, more manageable steps. And I only focus on the things I actually need to do. I still do non-essential activities, but I put them on another list and work on those when I feel I have more energy. This is hard because there are so many things that I want to do, and it sucks knowing that I will never be able to do all of them.
Similarly, it’s important to set realistic goals, both on a daily basis and larger, future goals. I try to stay mindful of my energy levels and adjust my expectations accordingly. This part has been very difficult for me. I have so many huge goals, and I hate not being able to work on them as much as I’d like to. It sucks not being able to hang out with my friends as much as I want or go out exploring every day. And it’s terrible how tired I get from doing basic things, like doing laundry or going to the store.
Slowly Build Up Tolerance Levels:
In addition to physical fatigue, I also struggle with brain fog. Brain fog is one of the common symptoms of several chronic diseases, including energy-limiting illnesses. It is a unique impairment type that plagues many in the chronic illness community. The best tip for those dealing with brain fog or mental fatigue is to very slowly build up how much you can do. Use your available energy to slowly expand how much time you can spend focusing and concentrating on mental tasks, whether that be dealing with the administrative tasks related to your health, living, and finances, or trying to enter the traditional job force.
It is extremely difficult to go from doing the bare minimum to working full-time. Unfortunately, many with disabilities and chronic illnesses are forced to do this due to the lack of financial resources available to ill people. If you can, try to make slow adjustments. Working part-time or working from home can be hugely beneficial to those with chronic disease – if these options are possible.
Take General Advice With a Grain of Salt:
Regarding illness, everyone has an opinion. Most of those opinions should be ignored.
For example, I’ve had many people, including random health care professionals tell me that I need to eat more nutritiously and drink more water. They say these will help with my energy. While these things might help some people a bit, they are not a cure-all. For example, I can’t eat. I also can’t drink water. So that comment is completely unhelpful to me.
Many also believe that more exercise is the answer to everything. It’s not. For the first six months after getting sick, I couldn’t exercise. My doctors told me not to. While I am now trying to build up strength, muscle, and energy, which exercise can help with, I only exercise for very short periods at a time. I am slowly building up how much I can eat, drink, and exercise. For some, these things are impossible, and suggesting that is the answer to their complex medical conditions and lack of energy is counter-productive.
Acceptance and Self-Compassion:
Finally, the most important thing is to acknowledge the limitations imposed by your illness. It is helpful to understand and accept that your worth is not solely determined by productivity. Practice self-compassion and let go of any guilt associated with not being able to do as much as others. You need to be gentle with yourself, celebrate small victories, and recognize your efforts, no matter how small they may seem.
Living with an energy-limiting chronic illness in a society that emphasizes constant activity requires a delicate balance. It’s helpful to recognize that life with an energy-limiting chronic illness requires flexibility. Be open to adapting your routines based on your energy levels, and don’t be too hard on yourself when plans change.
Things got so much easier when I accepted that my chronic illness was going to completely change my life.