As someone who has been publicly chronically ill for a very long time – since I started this blog in 2013 – I have been asked a lot of questions about chronic illness over the years. While there are occasionally unique questions, most of them are variations of the same ones. I figured that I would answer those common questions in this post, including the question, “What is a chronic illness?”
As always, I am not a medical professional. I’m sharing advice and answers based on my own experiences, and when I rely on scientific info, I always include a source.
What is a chronic illness?
Basically, a chronic illness is an illness that doesn’t have a cure and lasts long-term. The definition of “long-term” varies, but generally it means that it lasts at least 3 months. As a whole, chronic illnesses don’t have cures.
This is one of the reasons why I hate when people say, “X cured my cousin’s [chronic illness].” There is a 99.9% chance that it isn’t cured; someone might be in remission, which is awesome, but you’re not cured. (Remission is when you don’t have symptoms of your illness.)
Additionally, chronic illness is a subset of chronic conditions. Chronic conditions is an umbrella term for chronic illness, chronic pain, and more. What’s the difference? Well, I have a condition called tarsal coalition in both of my ankles which is one of the reasons why I had surgery in 2018. Tarsal coalition is technically a birth defect, as my ankles didn’t form correctly, but it’s not an illness.
What are examples of chronic illness?
I can tell you right now a list of my personal illnesses, which will give you an idea. I have rheumatoid arthritis, fibromyalgia, endometriosis, POTS, asthma, and anemia of inflammation.
Anemia of inflammation or chronic disease is “is a type of anemia that affects people who have conditions that cause inflammation, such as infections, autoimmune diseases, cancer, and chronic kidney disease (CKD)” (x). Basically, because of long-term inflammation, my body doesn’t absorb iron correctly by eating or taking iron supplements. In my case, the inflammation is from my rheumatoid arthritis. Instead, I get the extra iron I need through iron infusions. Sometimes I need 2 a year, sometimes I go a year and a half without one.
What you should know about TMJ arthritis
When will you be better?
It depends on what you mean. If by “better” you mean healed, then never. If you mean “have manageable symptoms,” then that’s right now. If you mean “feel better than you do now,” then it depends on research. I am on a treatment that works better than any other treatment I’ve tried, but I would like to feel better. There are so many more treatments available now than there were when I was diagnosed in 2010, so hopefully there will be even more treatments approved in my lifetime.
Aren’t you too young for [illness]?
Obviously, if I have it, I’m not too young. I hear this most often when I mention arthritis, which comes from the incorrect assumption that only seniors have arthritis, which is definitely not the case. First of all, the type of arthritis that people get as they age is osteoarthritis, and I have rheumatoid. (Learn about how these forms of arthritis differ here.) Second of all, people can be diagnosed with arthritis as young as 6 months.
I think that what it comes down to is that, for an extremely long time, kids wouldn’t be diagnosed with chronic illnesses unless they had extreme symptoms. But the fact that it took someone a long time to be diagnosed doesn’t mean that they didn’t have the illness before their diagnosis.
Basically, there are some illnesses where it’s uncommon for people to be diagnosed with it before the age of 30. But that doesn’t mean that you can’t develop or be diagnosed with the illness before you’re 30.
What is a “spoonie”?
This refers to someone who identifies with the spoon theory, which was created by Christine Miserandino.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for 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 really strong suggest you read the whole story because it is such a good explanation of living with chronic illness. I personally have moved away from using this explanation in recent years, but if someone were to ask, “Are you a spoonie?” I would say “yes.”
Read the full story on spoon theory here.
You’re chronically ill – you’re not disabled.
(Yes, this is a sentence and not a question.) This is really a matter of semantics. If someone requires accommodations of any kind – sitting versus standing, needing more time off than others, using a mobility device, requiring medication – then they’re disabled on some level. Similarly, the way I explain it is there are more people who are protected by the Americans with Disabilities Act than there are who identify as disabled, and there are more people who identify as disabled than there are people who receive disability checks from the government.
Chronic illness can cause disability, but not all forms of disability are chronic illness.
Is chronic illness a disability?
Why do you avoid gluten if you don’t have Celiac disease?
A lot of people are gluten-intolerant but don’t have Celiac disease; I’m one of them. But that’s because of the nature of the problem.
The Celiac Disease Foundation says, “Celiac disease is a serious autoimmune disease that occurs in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine” (x). People with Celiac disease have a disease, while people with gluten intolerance in general can have a variety of reactions for a variety of reasons.
Here’s how Celiac disease itself works:
When people with celiac disease eat gluten (a protein found in wheat, rye and barley), their body mounts an immune response that attacks the small intestine. These attacks lead to damage on the villi, small fingerlike projections that line the small intestine, that promote nutrient absorption. When the villi get damaged, nutrients cannot be absorbed properly into the body.
Celiac Disease Foundation
Like I mentioned, I am one of the people who is gluten-intolerant but who doesn’t have Celiac disease. How can this work? I’ll be completely honest: I don’t know exactly. What I do know is that when I eat gluten, extremely bad things happen, including horrific joint pain and also some symptoms that I don’t want to share online.
You can believe me or not. What I know is that I can’t eat gluten, but I don’t have the reaction that Celiac patients have.
How long did it take you to be diagnosed?
For me, it took 9 years from first symptom to RA diagnosis. In the meantime, I was diagnosed with tarsal coalitions in both feet, which was an accurate diagnosis, but the locations of the coalitions were not the same location as where my foot/ankle pain. When I had surgery in 2009, they found a bunch of scar tissue and arthritic damage where my pain ways. It is possible to have RA and OA, but my arthritic damage was more like RA than OA.
I am one of the 20-40% of arthritis patients who has seronegative rheumatoid arthritis, which means that I have RA but test negative to the arthritis blood test. This, in addition to the fact that doctors often dismissed my pain and imaging didn’t show all of the problems that I ended up having, made it take 9 years to be diagnosed.
Why is rheumatoid arthritis hard to diagnose?
There’s no way you have so many illnesses … is there?
Unfortunately, there is. The way I explain it is my autoimmune disease got lonely so it created friends. In all seriousness, a 2010 study found “About 25 percent of patients with autoimmune diseases have a tendency to develop additional autoimmune diseases” (x). And that’s just autoimmune diseases!
I have 1 autoimmune disease for sure (RA) and that one definitely caused my anemia (see above). But I personally believe that my RA created most of my other illnesses except for my asthma, even if there isn’t definitive proof. It’s more about the timing of them: for example, it’s too coincidental that when I went off my infusion to try another medication, I developed endometriosis.
Basically, there is scientific and observational reasoning that people with one or two illnesses can have way more. I know very few people who have only 1 illness.
How is chronic pain different from chronic illness?
It’s a whole separate thing. Chronic pain can be a symptom of chronic illness, like if you have rheumatoid arthritis. It can also be its own thing. For example, you can be in a car crash that leaves you with chronic pain but no chronic illness.
The Cleveland Clinic says, “Chronic pain is pain that is ongoing and usually lasts longer than six months. This type of pain can continue even after the injury or illness that caused it has healed or gone away. Pain signals remain active in the nervous system for weeks, months or years” (x).
I’ve talked before about the differences between acute and chronic pain, so I won’t talk a lot about it in this post. But suffice it to say, chronic pain and chronic illness are two different things.
Does [insert random treatment here] work for you?
Every single chronic illness patient is different, even people who have the same illnesses. I have a friend who has the same combination of illnesses as me and we have vastly different symptoms. Everyone is different!
That being said …
The number one way to get on my bad side is to suggest random treatments.
Why? Simple: I’ve been getting random treatment suggestions since I first started experiencing chronic pain in 2001. And almost none of them have helped me.
Sometimes people genuinely want to help! But it usually feels like the other person wants to be the one who showed me the error of my ways, or they think that if I just tried harder to feel better I would. It’s very patronizing.
A Guide to Chronic Illness for Those Who Don’t Have One
How do you get a chronic illness?
This varies a lot from person to person and from illness to illness. Some chronic illnesses are caused by using tobacco, drinking too much for too long, and/or poor nutrition (x).
The WHO says, “Other risk factors for chronic disease include infectious agents that are responsible for cervical and liver cancers, and some environmental factors, such as air pollution, which contribute to a range of chronic diseases including asthma and other chronic respiratory diseases. Psychosocial and genetic factors also play a role” (x).
Autoimmune diseases tend to have a genetic cause. Heathline says, “Certain autoimmune diseases, like multiple sclerosis and lupus, run in families. Not every family member will necessarily have the same disease, but they inherit a susceptibility to an autoimmune condition” (x).
My family is definitely an example of this. On my dad’s side, I am one of 3 people descended from my grandfather with an autoimmune disease. We all have different autoimmune diseases! On my mom’s side, I am one of 3 people descended from my great-grandparents with an autoimmune disease, and again, we all have different auotimmune diseases.
As you can tell, there isn’t a lot we know about the causes of chronic illnesses, especially as there are so many of them.
I hope this helped you understand chronic illness a bit better! Do you have any other questions?
Like this post? Share it! Then check out:
We Need To Talk about the “Disease Warrior” Model, Arthritis Glossary: Frequently Used Words, Caring for Rheumatoid Arthritis Patients,
Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.
This is such an informative post! I learned a lot about chronic disease that I never knew.
So glad that it could be helpful!
Very helpful post. I even learned how to use chronic conditions. One question in you discussion of chronic pain and chronic illness, you you say Fibromyalgia us both, right?
I definitely would. The chronic pain that comes with fibromyalgia is a symptom of the illness.
There is so much great information here! It was interesting to learn a bit more about your chronic conditions and how they affect you, plus more about the concept in general.
Such an informative article. Thank you for sharing!
Very informative and educational post. I stronly believe that most chronic diseases such as Diabetes, Obesity, Hypertension, Cardiovascular diseases and Rheumatoid Arthritis can be interconnected. Most times these disease states are linked to the inflammatory state of the body. Obesity = Inflammatory = chronic diseases. Genetic also plays a big role in many diseases.
Can multiple illnesses be interconnected? Definitely. Are they often connected via inflammation? Definitely. But obesity doesn’t play as big a role as we have been led to believe. BMI, for example, is totally bogus. (This NPR article breaks it down: http://www.npr.org/templates/story/story.php?storyId=106268439) And inflammation isn’t solely connected to obesity. Genetics play a MUCH bigger role than weight.
The inflammation from my RA, for example, means that if my RA isn’t managed correctly I could develop cardiovascular disease, which is the #1 cause of death of RA patients.
I know that this is a very round-about reply, but I wanted to have a record on my blog that I disagree with connecting weight to chronic disease.
Very well said. I too have a few chronic illnesses and even on my worst days I try not to let it get in the way of EVERYTHING that brings me mental support and comfort.