In my work in healthcare, I have encountered countless people who have shared with me that while they may appear to be healthy on the outside, things are not as they appear on the inside. To their friends, family, co-workers, and some healthcare professionals, they seem to have it all together. However, when we take the time to sit with people living with a chronic illness or disability, we sometimes find that pain, fatigue, depression, anxiety, shame, and guilt are silently causing many more challenges than we recognize. According to Sisk (2007), […] more than 125 million Americans have at least one chronic condition, and for more than 40 million, their illnesses limit daily activities. Only 7 million use a cane, walker, or wheelchair, making their disabilities visible. The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals,” (Sisk, 2007). To understand a person’s illness as a whole means looking beyond the physical implications we can see with our eyes and stepping into a more intuitive mindset to dig deeper and really try to understand what is going on. It is just as critical to treat the invisible parts of illness as it is to treat the physical aspects.

Emotional & Mental Health

Imagine heading into your doctor’s office and being told that what you were feeling is just par for the course of what to expect with your illness. Imagine not being given a thorough exam that includes how you are feeling mentally, not just physically, and living with these symptoms for months or years. Now imagine going to a family party, where you are told by well-meaning loved ones unsolicited things like: “It can’t be that bad”, or “If you just do x,y,z, you’ll feel better”, or “If you just stop doing x,y,z, you’ll feel better”, or “You’re being dramatic”, or “Everyone gets tired”, or “X,y,z worked for so-and-so, I bet if you do that it will work for you”, or the even “It could always be worse”. Doesn’t that just make your skin crawl? How many of these phrases have you heard in your own life? How many more have you heard? Not only are statements like these unhelpful, but it dismisses the invisible parts of the illness that are very real and incredibly challenging. It further creates feelings of shame, isolation, guilt, and low self-esteem that adds fuel to an already raging fire.

The unfortunate reality of the situations as described is how common they are and how frequently mental health conditions like depression and anxiety go undiagnosed. Depression and anxiety are diagnosed by qualified health professionals—such as Social Workers, doctors, Psychiatrists, Psychologists, and Licensed Mental Health Professionals. The criteria for diagnosing someone with depression or anxiety must meet certain characteristics, such as changes in mood, appetite, and sleep, over a period of time. These conditions can often show up in physical changes, such as fatigue, difficulty with focus, pain, and nausea. You may have seen commercials or movies depicting someone as being depressed, but symptoms of depression are often as unique as the person experiencing them.

According to the World Health Organization (2020), more than 264 million people worldwide live with depression (World Health Organization, 2020). This staggering number becomes only more complex when we take into account how many of those people are also living with a chronic illness. For those living with a chronic condition, it is reported that between 25-33% of people will experience symptoms of depression. This number is typically higher for women and for people who have a history of depression.

Roughly one-third to over one-half of people who live with symptoms of chronic pain will also experience depression in their lifetime (WebMD.com, 2021). For people living with Chronic Kidney Disease (CKD) and are not on dialysis, depression rates are up to three times as high than what is typically seen in the general population. According to Bates (2017), this number is similar for people living with End-Stage Renal Disease (ESRD) for anxiety (Bates, 2017). Studies have repeatedly shown that there is a significant relationship between having a chronic condition and increased risk for suicide. According to Liu et al. (2016), “It was demonstrated that among 200 HD patients, 21.5% had suicidal ideation, 3.5% had planned a suicide attempt in prior months and 3.5% had attempted suicide during their lifetime. Nevertheless, only a small proportion (12%) of the respondents had considered an association between dialysis and suicide,” (Liu et al., 2016). The data for young people living with a chronic condition such as ESRD is significantly higher, as well as for people who are just starting dialysis.

It is critical to note that while this data demonstrates a relationship for some between living with a chronic condition and undiagnosed depression, anxiety, and suicidality, it does not automatically mean that you or your loved one will experience this or will have suicidal thoughts. This information is important to have because it shows that there is a sobering connection that is not fully appreciated by many in our medical community or in our personal lives. With this information, it helps us to better understand the complexities of the invisible parts of chronic illnesses so we can understand what we are experiencing more completely. It also allows us to advocate for better, more comprehensive treatment for ourselves and our loved ones so our quality-of-life is improved.

Overlapping Symptoms

One of the primary challenges in treating the invisible parts of illness is the fact that there may be numerous, competing symptoms that are often chalked up to being another side effect of our chronic condition. What this means is that what providers often look for in assessing for depression or anxiety may be more likely to be written off as a side effect from the chronic illness. For example, when diagnosing someone with depression, providers often look to changes in: weight, appetite, sleep, energy, pain, mood shifts, focus, concentration, and pain. Many of these changes can be—and often are—pushed aside as being a side effect from a medication, treatment or the condition itself. This is especially true when people “do not look ill”, have been living with a chronic condition for some time, or may have been adhering to treatment as prescribed.

Researchers have found that depression can be caused by a chronic condition, such as pain. Even more important, depression can increase the intensity of pain and dampen our ability to relieve these symptoms. Shayan et al. (2017) found that diagnosing someone living with (ESRD) with depression is typically more difficult than diagnosing someone who has CKD. This is due to the fact that many of the symptoms often found with ESRD, such as: anemia, fatigue, difficulty concentrating, difficulty sleeping, poor appetite, and uremic symptoms are often symptoms we see when assessing for depression (Shayan et. al, 2017). So, while someone may clearly meet the criteria for depression or anxiety, medical professionals may focus solely on the physical aspect of the condition and be less likely to assess for a mental component.

Medical Non-Compliance & Poorer Health Outcomes

When I was working in the ICU, I would receive countless referrals from medical providers requesting that I visit a patient because he or she was “medically non-compliant with treatment”. I find describing someone as “medically non-compliant” as being disrespectful, unhelpful, untrue, and a raw example of ignorance of the complexity of a health condition. When I would go in the room and meet with the patient and his or her family, I would often realize that the reason they may not have been engaging in regular treatment practices was not due to inherent laziness or choosing to ignore medical guidance, but was generally due to: a mental health condition, not being able to afford medications and co-pays, transportation, limited understanding of their condition, language barriers, limited social or caregiver support, limited mobility, cultural or religious beliefs, fear, and cognitive function. The misconception that medical non-compliance is due to a personal flaw is a harmful practice that ignores that a person’s condition has many factors that are both seen and hidden. This leads to misdiagnosis and frequently undiagnosed conditions, limits to effective treatment, and poorer quality-of-life overall.

It is an important consideration to note that undiagnosed depression and anxiety lead to poorer health and treatment outcomes, as well as the increased likelihood of being described as a “medically non-compliant” patient. Why is this? When experiencing the complex symptoms from both a chronic condition and mental health challenges, such as pain, fatigue, muscle tenderness, low energy, and lower motivation than we are used to, it makes it that much harder to show up to doctors’ appointments, engage in healthy habits consistently, check in with loved ones, and follow treatment plans. What may be seen as stubbornness or frustration by our providers or loved ones may actually be masking fear, depression, and anxiety. If a person living with a chronic condition is too fatigued or has severe pain with movement, not only can this worsen depression and anxiety, but it can lead to weight gain, new or worsening health conditions, poorer quality-of-life, and increased risk of premature death.

Nurturing the Invisible Parts of Illness

Undiagnosed chronic health conditions can be experienced for years with countless labs, appointments, doctor’s visits, and co-pays before answers are given. Once diagnosed, there are likely many mixed emotions. While medical professionals are understandably concerned with a person’s cluster of medical symptoms, it is only one part of the equation. While in Graduate School, I took a wonderful Healthcare Social Work course with an awesome professor. He encouraged us to look beyond a person’s cluster of symptoms and push beyond the belief that someone being “medically non-compliant” is a problem that the patient needs to handle, not an issue with communication that includes his treatment team and social support system.

One of the case studies from my textbook in that class talked about a person who worked in a restaurant and had sprained his ankle. The provider understandably focused on the patient needing to stay off of his foot for a few days so he could recover and the injury would not worsen. The patient was devastated in hearing this information, as he had concerns about missing work, which would mean a loss of income that he relied on. The patient did not have an opportunity to convey this information to the provider and the situation worsened. The patient threw away the bandage he had been given, returned to work, risked the potential for future injury, and developed to a new mistrust of medical providers. This reinforced the view of the physician of the notion of “medial non-compliance” (Gehlert & Browne, p. 243).

This story is important because it is an unfortunate, yet common example of not nurturing the invisible parts of an illness or injury. We do not question the evidence that someone has a chronic condition, such as Chronic Kidney Disease and it is just as important not to question the elements of it that are not easily seen on the outside. So, how do we love, honor, and nurture the invisible parts of illness that can be easily dismissed by ourselves and others as “only” a physical side effect or “medical non-compliance”? We start with the following:

Checking In With Our Bodies:

-Download apps to track pain, sleep quality, triggers to physical symptoms, and treatments that may be helping provide needed relief

-Take frequent breaks and know your limits—you can’t burn the candle at both ends forever and not expect to burn out at some point.

-View rest as a badge of honor, not running ourselves ragged. I read an excerpt in a book recently that talked about an experiment that was conducted in the 40s. The experiment measured these workers’ energy levels as they loaded very heavy iron onto freight cars. They worked until they had loaded 12.5 tons of iron onto the truck and were exhausted by noon. The next day, the researchers asked them to load the iron for 26 minutes at a time and then take a 34-minute break. At the end of the day, they were able to load 47 tons of iron!

-Meditation and mindfulness practices

Raise Our Awareness:

-Research your diagnosis and the symptoms you may experience. Then, research the prevalence rates of having another condition, such as depression or anxiety, and how these symptoms may be intensified and undiagnosed.

-Find a therapist and doctor who are trained in working with chronic health conditions and have a good understanding of the complexities that the invisible part of the illness can cause. Ask your provider to help you with understanding.

-Find groups, articles, and others who have a similar diagnosis and listen to their stories—you’ll be surprised at how many people have an “AHA!” or “Me too!” moment that changes their lives.

Raise Others’ Awareness:

-Every September is National Invisible Chronic Illness Awareness Week!

-Include our loved ones in our appointments and groups. At times, it may be helpful to include them in your therapy session as well.

-Encourage our loved ones to do their own research on the condition. While you may have a great understanding of your symptoms, it can be daunting at times to have to be the expert and the person living with it at once.

Last, but certainly not least, give yourself some extra love, care, and attention. You are doing better than you think you are!