When it comes to chronic illness, there’s a lot to learn. Maybe you have a chronic illness, maybe someone in your life has one. I’ve talked a lot about specific elements to chronic illness over the years, but I thought I would go into some chronic illness basics today, such as the question, “What is considered a chronic illness?”  

I am not a medical professional. I cite my sources and refer to my personal experience as a patient. 

What Is Considered a Chronic Illness? And Other Chronic Illness Basics

Since this is about chronic illness “basics” I’m not going to address things about specific conditions. We’re just going to talk about chronic illness at large, which means that I might make sweeping statements that don’t apply to every single illness or condition. That being said, let’s get into it!

Chronic illness definition

I know that this seems simple, but I did say that this is a post about the basics! A chronic illness is an illness that is chronic. It doesn’t have a cure, although in some cases it can be treated and in even fewer you can go into “remission.”

Let’s talk about some key terms that are associated with “chronic illness.” But, first and foremost, know that patients really use all of these in conjunction with chronic illness. I’m never going to go, “It’s a syndrome, not an illness, get it right.” But explaining these terms can help you better understand what is considered a chronic illness. 

A disease is “a condition of the living animal or plant body or one of its parts that impairs normal functioning and is typically manifested by distinguishing signs and symptoms […] A disease usually has a defined or understood cause, process, and treatment” (x). So we understand it and we can treat it, even if we can’t cure it.

A syndrome is “a group of signs and symptoms that occur together and characterize a particular abnormality or condition” (x). So while we might see certain symptoms together, we may not understand it and/or be able to treat it. And it’s important to differentiate between treating the condition and treating the symptoms. For example, rheumatoid arthritis is a disease because we know what’s going on and we can treat the underlying issue, the immune system. But for fibromyalgia, we can really only treat the symptoms and not the syndrome itself, and we know very little about what’s happening.

Here’s another way to look at the difference between disease and syndrome. IBS, or irritable bowel syndrome, can be a specific diagnosis or a category. Crohn’s disease is a disease, but it is one of the conditions under the IBS umbrella. People with IBS can experience “cramping, abdominal pain, bloating, gas, and diarrhea or constipation, or both” (x). See how vague that is? People with Crohn’s disease have an autoimmune disease in which the immune system causes “inflammation of your digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition” (x).

Check out my tips for describing your pain to doctors here.

A condition can be an illness, or it can be just a thing that happens. For example, I have the condition tarsal coalition. It’s not an illness; it’s a genetic condition. My DNA thinks that some of the bones in my feet should be fused, so where there should be space between the bones, there is bone. Tarsal coalitions cause bone fusion in a way that makes it incredibly easy to twist your ankles, it can cause osteoarthritis around the joints, and it can cause a lot of pain.

There’s no medication for it, and, other than medication to make pain better, I can’t imagine what theoretical medication for it would do. Bone where there shouldn’t be bone can’t be medicated away, you know?

Plus, it doesn’t bother everyone who has it. It did bother me, so I’ve had subtalar fusions performed on both of my feet. This involved fusing more bones so they’re fused in a way that reduces pain instead of increasing it. (Read more about my experience with tarsal coalition surgery here.)

Even though technically I don’t exactly have the “bad fusion” any more, I’ll always have the condition tarsal coalition. If I were to have biological children, then they would have a big chance of having it. Again, it’s not an illness; it’s a thing my body does. 

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What is considered a chronic illness? 

Chronic illness is an umbrella term used by, well, everyone. Technically, though, you have either a disease or syndrome. As said above, a disease means your condition is understood and treatable and a syndrome means your condition is a collection of symptoms. So, as I understand it, your syndrome can’t be a disease and your disease can’t be a syndrome. But your disease and your syndrome are chronic illnesses. 

In everyday conversation, chronic illness equals a syndrome or a chronic disease. I say that I have 7 chronic illnesses, even though technically I have 3 chronic diseases and 4 syndromes (and the tarsal coalition condition).  

Again, I’m never going to say, “You have fibromyalgia, which is a syndrome and not a disease, so you’re not a chronic illness patient.”

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What are examples of chronic disease?

Let’s do a run-down of my chronic diseases specifically as an example. These are just the things that fall under “disease” and not “syndrome,” and these are all diseases because we understand what is happening. 

Rheumatoid arthritis – “Arthritis” literally means bone inflammation or pain, and osteoarthritis is not an illness. Rheumatoid arthritis is an autoimmune disease in which “your immune system mistakenly attacks your own body’s tissues” (x). This is a disease both because we understand what is happening and because we can treat it.

Asthma – The American Lung Association says that “Asthma is a lung disease that makes it harder to move air in and out of your lungs” (x). I have allergic asthma, so my lungs react when I inhale certain allergens. The National Institute of Health says, “asthma often happens when the immune system strongly reacts to a substance in the lungs” (x). This is a disease both because we understand what is happening and because we can treat it.

Anemia of chronic disease – This is a form of chronic anemia that happens as a result of having a chronic disease, and it’s often caused by an autoimmune disease (x). Anemia itself “happens when you don’t have enough red blood cells” (x). When you have this form of chronic anemia, you generally have long-term inflammation, which “can affect your body’s ability to use iron needed to make enough red blood cells” (x). While we can’t treat this at the root of the problem (other than preventing someone from developing this if they have chronic inflammation), we know what is happening and why.

Now that we’ve talked about my chronic diseases, let’s look at my syndromes. 

Sjögren’s syndrome – This is the newest thing to join the diagnosis party! I’ve had it for a long time, but I was diagnosed in January. Sjögren’s involves dry eyes and dry mouth, and it’s an autoimmune disorder. The Mayo Clinic says, “In Sjogren’s syndrome, your immune system first targets the glands that make tears and saliva” (x). This is a syndrome because, while we kind of know what’s happening (autoimmune), we don’t know much about it.

Fibromyalgia – Fibromyalgia involves “widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues” (x). As the Mayo Clinic says, “Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain and spinal cord process painful and nonpainful [sic] signals” (x). See that “Researchers believe”? That’s because we know very little about it. It’s also a syndrome because the treatments are all about treating the symptoms, and even then treatments don’t do much. (Just ask any fibro patient.) 

Endometriosis – In endometriosis, “tissue similar to the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus” (x). A huge issue with endometriosis is that “With endometriosis, the endometrial-like tissue acts as endometrial tissue would — it thickens, breaks down and bleeds with each menstrual cycle. But because this tissue has no way to exit your body, it becomes trapped” (x). This is a syndrome because no one really understands why this happens and because treatments are about treating the symptoms, not the cause, and even then that only works some of the time. My biggest symptom is my body creating and frequently rupturing ovarian cysts, so my treatment is birth control to stop ovulation, which stops/reduces my body creating cysts.

POTS – POTS, or postural orthostatic tachycardia syndrome, is a syndrome of the autonomic nervous system that affects blood flow (x). The Cleveland Clinic says, “​​POTS causes the development of symptoms — usually lightheadedness, fainting and an uncomfortable, rapid increase in heartbeat — that come on when standing up from a reclining position and relieved by sitting or lying back down” (x). This is a collection of symptoms in which we only kind of understand what is happening, which makes it a syndrome. 

As a note, from this point forward in this post, I’m going to go back to using “chronic illness” and “chronic disease” interchangeably. Patients don’t care which term you use, and frankly it doesn’t matter unless you’re a researcher who has to use the correct term or something similar. I use “chronic illness” because it covers all 7 of my conditions.

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What are the top 10 chronic diseases?

I actually had a really hard time finding this! You’re going to have to make do with 8, as I wanted to include chronic diseases or illnesses and not “just” chronic conditions. 

That being said, 8 of the the top 10 chronic diseases – aka the most common chronic diseases – in the United States include heart disease, cancer, COPD, asthma, diabetes, arthritis, Alzheimer’s disease, and kidney disease (x).  

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What qualifies as chronic pain? 

According to the Cleveland Clinic, it officially counts as chronic pain when it “lasts for over three months” (x). For some people they are in pain constantly. For others, it’s every day but not necessarily every minute of every day. 

I personally am in the camp of pain all the time, but I also have so many parts of my body affected that I don’t experience pain in every part of my body or every joint every day. My wrist might hurt one day and not the next, but on that next day I have pain in a finger or my elbow instead (or even in addition). 

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Can chronic pain go away?

Technically it is possible for some people with chronic pain to not have pain any more, although most people who say “I have chronic pain” are people whose pain doesn’t go away. Whether it be because of an illness that has pain as a symptom or damage from an injury that causes pain, there are a lot of people who have chronic pain that never goes away.

For example, let’s say that I only had tarsal coalitions and I didn’t have rheumatoid arthritis, fibromyalgia, or endometriosis. My left foot started bothering me in September 2001 and I had 2 surgeries in 2009 that essentially cured my left foot pain. A few days a year I have pain in my left foot, but the rest of the time I don’t. In that case, I would probably say that my chronic pain went away.

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What is a spoonie? 

A “spoonie” is based on spoon theory, and it’s basically a shorthand for someone with chronic illness or chronic pain. Chronic illness is one thing, chronic pain is one thing, and some chronic illnesses involve chronic pain. But you can have chronic illness without chronic pain, and you can have chronic pain without chronic illness. “Spoonie” is someone who feels connected to spoon theory. 

Spoon theory was created by Christine Miserandino, a lupus patient, as she tried to explain what it’s like living with an autoimmune disease. A friend “asked what it felt like, not physically, but what it felt like to be me, to be sick” (x).

Here’s how she explained living with lupus:

“I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

“I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

[…]

“[F]or my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

“I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

“I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. […] I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on.“

Read the whole story about how Miserandino created spoon theory on her website. 

In recent years, I have moved away from spoon theory as a whole. At this point in my chronic illness and disability journey, it feels cutesy, and I would rather say that I’m having a bad illness day than a low spoons day. 

That’s not to say that spoon theory is bad or it doesn’t work. It’s just not how I choose to describe myself first and foremost. If someone asks me, “Are you a spoonie?”, I would say yes. But I say that I’m Sick, chronically ill, or disabled before I say that I’m a spoonie, and that’s a personal preference. 

No spoons, only knives 😉 

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How many spoons does a healthy person have? 

As Miserandino says, a healthy person has an unlimited number of spoons. That’s because a healthy person is not limited by spoons. 

That’s not to say that all healthy people are totally good every single day. But healthy people are not limited in the way that chronically ill people are. Spoon theory is not for healthy people. 

No matter how good a day I’m having, I’m always limited by spoons. Some days I wake up and have fewer spoons. Some days I wake up and I have a normal number of spoons but they’re all a little crooked. Some days I wake up and I have almost no spoons. Some days I wake up and my spoons are chipped or twisted. Some days I wake up and I have silver spoons, and some days they’re plastic spoons.

While spoon theory was created by someone with a physical chronic illness, I think people with mental illnesses should get to use spoon theory. Maybe not everyone or every mental illness – I have generalized anxiety disorder and that doesn’t feel like spoon theory applies, but with depression I think it absolutely does – but I think there are plenty of people with mental illness and without physical illness for whom spoon theory applies.

At the end of the day, I’m anti-gate keeping, so I’m not going to say someone can’t use spoon theory unless they don’t have any physical illness symptoms and they don’t have a mental illness. I know this is shocking, but yes, those people exist!

Long story short: if you don’t have a physical illness or a mental illness, spoon theory isn’t for you.

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Is chronic illness a disability? Is chronic pain a disability?  

There are a variety of definitions of disability, but whatever way you slice it, I think yes. 

The medical model defines disability as “an illness or disability as the result of a physical condition, which is intrinsic to the individual (it is part of that individual’s own body) and which may reduce the individual’s quality of life and cause clear disadvantages to the individual” (x). 

If your chronic illness reduces your quality of life and causes clear disadvantages to you, then your chronic illness disables you. 

The social model defines disability “identifies systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently) as contributory factors in disabling people” (x).

If general society excludes you purposely or inadvertently due to your chronic illness symptoms, or society has negative attitudes towards you due to your chronic illness/illness symptoms, then your chronic illness disables you.

Let’s look at it another way: how does the Americans with Disabilities Act qualify disability? 

According to the department of Health and Human Services, “An individual with a disability is a person who has a physical or mental impairment that substantially limits major life activities; has a record of such an impairment; or is regarded as having such an impairment” (x). 

“Major life activities” means “caring for one’s self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning and working” (x). So if your chronic illness limits how much you can work, you’re disabled. If it limits taking care of yourself or living independently, you’re disabled.

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I hope that this post has helped you better understand chronic illness, whether you read this for yourself or for someone in your life. There’s always more to learn. 

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