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What is Chronic Illness?
TL;DR: Chronic illness is an umbrella term that covers chronic disease, or more common chronic illnesses like heart disease, and what I call mysterious illnesses, or less common chronic illnesses that we generally know less about, like hypermobile Ehlers-Danlos Syndrome (hEDS). Every person's experience with chronic illness is unique. Therapy may be helpful for people with chronic illness and the people who love them, as it is a major stressor to adjust to.
Chronic illness is an extremely broad umbrella term that covers any medical condition that lasts for longer than one year and significantly (negatively) affects a person’s daily activities or requires continual medical care.
Disclaimer: You'll notice throughout this article that I make some generalizations: for instance, people with less-common chronic illnesses tend to be younger and tend to be female. I make these generalizations carefully, always using qualifiers such as "tend to," to increase inclusion. I included these generalizations in this article both to educate on trends and also to help people understand more of the systemic barriers people are likely to encounter. As with any generalization, though, there are many, many valuable exceptions.
Common chronic illnesses
Some very common chronic illnesses that are often cited by the Centers for Disease Control and Prevention, National Institutes of Health, and more are asthma, chronic obstructive pulmonary disorder (COPD), both type 1 and type 2 diabetes, heart disease, and HIV/AIDS. Some people with cancer also consider cancer a chronic illness, especially if it is something that has recurred or is likely to recur one or multiple times after the first occurrence.
Not-as-common chronic illnesses
There are a number of other chronic illnesses that are less common in the United States. Especially since COVID-19 first arrived in 2020, there has been a recent increase in what are considered “rare” chronic illnesses. “Rare” chronic illnesses include (in alphabetical order):
Adenomyosis
Arachnoiditis
Celiac disease
Chronic fatigue syndrome/Myalgic encephalomyelitis (CFS/ME)
Chronic UTIs
Chronic yeast infections
Complex regional pain syndrome (CRPS)
Crohn's disease
Dyspareunia
Ehlers-Danlos Syndromes; most common is hypermobile Ehlers-Danlos Syndrome (hEDS)
Endometriosis
Fibromyalgia/Central sensitization to pain
Gastroparesis
Grave's disease
Hashimoto's thyroiditis
Hypermobile Spectrum Disorder (HSD)
Interstitial cystitis
Irritable bowel syndrome (IBS)
Long COVID
Lupus
Mast cell activation syndrome (MCAS)
Migraines & migraine disorders
Multiple chemical sensitivity
Multiple sclerosis (MS)
Orthostatic intolerance
Polycystic ovarian syndrome (PCOS)
Postural orthostatic tachycardia syndrome (POTS)
Raynaud's disease
Rheumatoid arthritis (RA)
Ulcerative colitis
Vaginismus
Vulvodynia
Terminology
Currently, there is no particular term that I know of used throughout the medical community to distinguish more common/better-known chronic illnesses from the less common/lesser-known chronic illnesses.
Authors such as Sarah Ramey have proposed terms like “Mysterious illness” to describe lesser-known illnesses. Alternatively, some providers and establishments may refer to better-known conditions using “chronic disease” and lesser-known conditions using “chronic illness.” For the sake of this article, I’ll use chronic illness to refer to all chronic illnesses, chronic disease to refer to better-known chronic conditions, and mysterious illness to refer to lesser-known chronic conditions.
Shared chronic illness experiences
There are many experiences that most folx in the chronic illness community share. For instance, many people experience a significant decrease in their quality of life. They are more likely to develop anxiety, depression, and other mental health concerns. They are also more likely to experience relationship stress, especially with romantic partners.
Additionally, people with chronic illness may experience systemic oppression and may be on the receiving end of ableism, including reduced access to work, education, healthcare facilities, and other opportunities and places. It can impact people’s social lives, in that they may not be able to do activities they were able to do before becoming ill. Many folx with chronic illness spend more time and money on medical treatment as well, which can be extremely expensive and stressful.
There are an infinite number of potential stressors common to the chronic illness community; these are just a few.
Mysterious illness experiences
While there are many experiences people have in common in the two communities, there are some experiences that are typically unique to the mysterious illness community.
People with mysterious illness usually take far longer to be diagnosed than people with chronic diseases, because not as many (and sometimes extremely few) providers know how to identify, diagnose, and treat their condition. There are generally fewer treatments available for people with mysterious illness. People with mysterious illness are less likely to qualify for social security disability and other forms of assistance. In general, people with mysterious illness tend to be younger, and they tend to be female; meanwhile, people with chronic disease are more likely to be older and male.
Unique mental health concerns & experiences
In therapy, people with chronic illness may have unique concerns and experiences they want to work on, whether in individual or relational therapy. Below are just some common therapeutic issues I have seen in practice and in research.
Individual therapy:
Accommodations & Advocacy -- How/Do I advocate for myself (at work, at school, etc.)?
Communication -- How/Do I tell other people that I'm sick?
Existential stress -- Will I be ok? What does chronic illness mean for me? How does it fit into my life experience and trajectory?
Identity -- Who am I now? How do I find meaning in different ways now?
Relationships -- How have my friendships changed? Family relationships? Romantic relationships?
Relationship to body -- How do I exist in this body that feels different than it used to? How does my body feel now? How does my body communicate with me now?
Symptoms -- How do I cope with the constant or inconsistent symptoms?
Trauma
Relational therapy (therapy with more than one person as the client):
Adjusting to new limitations, routines, etc.
Caretaking, and how to access non-caretaking modes
Existential stress -- Will we be ok now that you are sick? Will you be ok now that you are sick? What do we do if you get better? What do we do if you don't?
Feeling disconnected -- Who are you now? Who am I to you now? What do we mean to each other?
Relationship identity -- How do we still be normal to each other? What is our relationship story?
Sex -- Would it be helpful if our sex life changed? How can we still find ways to connect?
Support system activation -- How do we bring more people into our support system? How do we still support others?
Stress -- Financial stress, time stress given extra medical appointments, workplace stress, and more
How therapy can help
Therapy can be a vital space to slow down and adjust for people with chronic illness and anyone connected to someone with chronic illness. For individuals, therapy is a rare time and space to focus entirely on you, with no other demands on you or your time besides reflecting and getting in touch with your wants and needs. For relationships, therapy can be a beautiful way to reconnect. Especially for romantic partnerships, and especially partnerships with kids, how often do you get a whole sixty to ninety minutes to just sit and connect with your partner? The world seems to move at an increasingly speedy rate. But when we offer ourselves space to slow down, we can make profound changes in our lives and the lives of others that help us feel more aligned and more whole.
Sources
The Lady's Handbook for Her Mysterious Illness: A Memoir, by Sarah Ramey
