If you suffer from a chronic health condition and/or an invisible illness, like me, you might find yourself feeling burnt out, frustrated, misunderstood, and exhausted. There are a few things that are important for you to know about living with a chronic health condition. The first thing to know is you are not alone- about 60% of Americans have a chronic health condition. This means that over 150 million people in the US have a physical or mental health condition that lasts more than a year and either limits ability or requires ongoing treatment. The second thing to know is that there are ways to cope with the impact your chronic condition has in your life and there is support out there to help. Coming from personal experience living with a chronic autoimmune disorder, having the right support and tools makes all the difference. I hope to share with you a few tips I have learned with my professional experience, personal experience, and research of course!
People who suffer from chronic illness often identify with having what we call an invisible illness- think highlight reel on instagram. Having an invisible illness means oftentimes people do not know you are struggling and you have to make decisions whether or not to disclose to them either your condition or your symptoms. This can bring on feelings of being a burden, being seen as weak, or fear of being treated differently. To add- it can also be extremely frustrating to hear things like, “you don’t look sick” or “you seemed fine yesterday”. Chronic health conditions can have fluctuations in symptoms from moment to moment, so yes- I might have been fine yesterday but now my symptoms are flaring up or I have used up all my energy.
Having an invisible illness also means you have to be your own advocate with medical professionals and the healthcare system. A component of most chronic health conditions is not having a cure or straightforward testing in order to get a confirmed diagnosis. Many people with chronic health conditions have struggled for years without any answers or reasoning behind their symptoms. Lastly, having an invisible illness or chronic health condition can lead to feelings of isolation and low self-esteem. It can feel like you have lost control of your life and your future.
Struggling with symptoms that either people cannot see, cannot understand, or cannot cure is extremely difficult. Although we all have different experiences with our conditions and functioning level, it is important to recognize that we often have had to go through a grieving process- grieving our physical abilities, our mental abilities, our expectations, our life goals, or a life we previously had. Looking towards the future can be difficult when we don’t always know what the next day holds.
There are two main resources I lean on in my practice and my personal health journey- the Spoon Theory and Acceptance and Commitment Therapy. Let’s talk more about these concepts.
Spoon Theory
The Spoon Theory is a way to demonstrate to healthy people what it is like for someone living with a chronic health condition or illness. The idea behind Spoon Theory is that a healthy person starts their day with an endless amount of spoons and someone with a chronic illness starts each day with a limited amount. Each task in your day uses a certain amount of spoons (think of spoons as energy). For those with a chronic condition, they have to be intentional about what they use their spoons on because if they over use their daily spoons, they then start the next day with less spoons. Over time, chronically using all of the spoons for the day leaves them at a deficit. Having a set number of spoons is also representative of being controlled by a disease, illness, or condition. We would all like to have endless spoons and not have to think about where we are “spending” for the day.
The Spoon Theory is a helpful way to express the struggles people living with a chronic illness face when deciding what to do with their energy, or spoons, each day. What this might look like is if I know I have a social event in the evening, I might have to cut back on something else that day in order to save up enough spoons for that event. Sometimes when we have a chronic illness, we often have to be mindful of not “over doing it” and therefore have to set boundaries on what we can and cannot achieve in a day. For a healthy person, they might experience this concept when they are sick with a cold or flu.
This leads me to another aspect of the Spoon Theory. When you have to constantly be thinking about how you spend you spoons for the day, you often start to have anxiety about the “what ifs”. Like, what if I get sick, what if I get called into another meeting, what if my children need me, what if I have an emergency? This leads to anxiety around storing up our spoons to make sure we have them when we need them, which is not always possible. Getting hit with a cold or flu, for everyone can be tough, however, if you are counting spoons, it can really make a large impact on your wellbeing and functioning. Having the Spoon Theory can be a really helpful way to get validation and support from those around you. I have found it helpful not only for my own understanding of myself, my limitations, but in communicating with loved ones.
Acceptance and Commitment Therapy
Acceptance and Commitment Therapy (ACT….pronounced like the word “act”) is a mindfulness based behavioral therapy that focuses on taking action. ACT helps you understand and identify your values and how your values guide, motivate, and inspire your behaviors. A major aspect of ACT is identifying how to do these things mindfully.
One of ACT’s core messages is “accept what is out of your personal control and commit to taking action that enriches your life”. The way this shows up in real life is if I am going through something difficult, i.e. experiencing a loss, focusing my energy on something that is important to me, something I have a passion for, gives me fulfillment and purpose that otherwise could be lost by the loss. For this reason, ACT can be particularly useful when dealing with chronic disorders or conditions. Yes, I might have pain or physical limitations, however, I can still have a full and meaningful life.
The goal of ACT is to create a rich and meaningful life while accepting the pain that inevitably goes with it. The “pain” can be things like grief, loss, rejection, disappointment, failure, illness, injury, aging, and the list goes on. These things are inevitable to happen in our lives and oftentimes are the reason we seek out support or therapy. ACT gives us tools to cope with these things, accept that we cannot change them, and continue to live our lives with meaning and purpose. You might be thinking “it’s not that easy” and you are right. These things do not change or get better over night, however, the skills used in ACT guide you through that process.
The nice part about it is that once you have learned these skills, you can apply them to other situations or events in the future. Identifying our values gives us a foundation we can always pull back to. Sometimes we just need that reminder or refresher to get back on track.
Here are some quick things to know about ACT:
Issues ACT is evidenced based in:
- Mood disorders (anxiety, depression, bipolar disorder)
- Substance use disorders
- Chronic pain
- Chronic illness
- Post traumatic stress disorder
- Grief/loss
- Intrusive thoughts
The core principles of ACT are:
- Contacting the present moment (being psychologically present)
- Defusion (separating or detaching from our thoughts, images, and memories)
- Acceptance (opening up and providing space for the painful feelings, sensations, urges, and emotions)
- Self-as-context (identifying the thinking self and the observing self)
- Values (know what matters to you)
- Committed action (taking effective action guided by your values)
Living with a chronic condition or invisible illness is undeniably challenging, but tools like the Spoon Theory and ACT can help you navigate with resilience and purpose. Remember, you are not alone, and support is available. Be kind to yourself, focus on what matters, and take it one step—and one spoon—at a time.