Invisible illnesses, though hard to see, can be debilitating for patients and ultimately affect their quality of life. This article will review invisible illnesses while touching on some of the common challenges patients and providers face in treating these conditions.
Understanding Invisible Illnesses
“Visible” illnesses are those that you can readily see, such as when someone uses a wheelchair and is clearly physically disabled. “Invisible” illnesses, on the other hand, are classified as diseases or conditions that aren’t apparent to the naked eye. At first glance, people with an invisible illness may appear relatively “normal”, although under the surface they are struggling with something unseen.
So, what are some examples of invisible illness? To name a few: diabetes, cancer, depression, chronic pain, chronic fatigue, heart failure, lupus, multiple sclerosis, rheumatoid arthritis, bipolar disorder, anxiety, and more are all conditions that aren’t easily distinguishable at first glance. Regardless, all of these conditions can be debilitating or even life-threatening despite sometimes being “invisible”.
Invisible illnesses impact as many as 10% of Americans, amounting to 61 million people in the US dealing with some sort of mental or physical disability. Thus, it is essential to be aware that these can exist and understand the many complexities of living with and treating invisible illnesses (1).
Challenges Associated with Invisible Illnesses
There are several barriers associated with invisible illnesses outside of the diseases themselves. These challenges include:
- Diagnostic challenges. Because invisible illnesses lack visible symptoms, they are difficult to diagnose. Symptoms may overlap with other types of conditions, or there may not be definitive diagnostic tests for that specific condition.
- Stigma and misunderstanding. Because invisible illnesses are not something you can see, outsiders may underestimate the impact of the condition or may hold skepticism or disbelief regarding the illness.
- Quality of life. These conditions usually involve chronic symptoms that can significantly impact your day-to-day. Things like fatigue, pain, poor cognition, or emotional instability can affect one’s quality of life.
- Access to healthcare. Invisible illness can require specialized care, however, things like geographic location, insurance coverage, financial barriers, and gaps in the healthcare system can limit healthcare access.
- Challenges in treatment. Treatment of invisible illnesses usually involves a trial-and-error process, where several medications must be tried before finding a suitable regimen. Additionally, not all invisible illnesses will have effective treatment. One such example of an invisible illness with complicated treatment is bipolar disorder, which will be discussed later.
Challenges in Accessing Medication for Invisible Illness
As aforementioned, it can be particularly difficult to treat an invisible illness. Unlike visible illnesses that manifest physically, invisible conditions are not well-defined physically and are complicated by a spectrum of symptoms. As such, these disorders make treatment challenging and require a nuanced approach to care. Challenges specific to treatment include:
- Lack of medication options. A lot of invisible illnesses do not have many treatment options, and some may not have any treatment at all. Compared to more visible and well-researched conditions, invisible illnesses usually lack targeted pharmaceutical therapies. Thus, patients have few options when it comes to managing their symptoms effectively.
- Side effects. Even if medication is available for a certain condition, medication does not come without some risks. Many treatments are accompanied by significant side effects like fatigue, weight gain, gastrointestinal issues, cognitive impairments, and more. Ultimately, such issues can impact a patient’s quality of life, and in some cases, make treatment not worthwhile.
- Trial and error in finding effective treatment. Treatment is not a one-size-fits-all approach, and not all medications will work for all patients. Thus, treating invisible illness involves a lengthy trial and error process, which can involve experiencing several side effects, not responding to therapy, or worsening of symptoms.
- High treatment costs. Invisible illnesses can be expensive, particularly for chronic conditions that require long-term treatment. Patients may have to deal with high out-of-pocket expenses for medication, doctor’s office visits, and more. For example, many biologics used to treat rheumatoid arthritis cost thousands of dollars monthly, making it challenging for patients to continue treatment.
Invisible Illness Profile: Bipolar Disorder
Now that we understand the general challenges of treating invisible illnesses, let’s review how these impact bipolar disorder, an invisible condition.
One of the biggest obstacles patients with bipolar disorder face is the lack of effective treatment options. Several medication options exist for bipolar, including lithium, antipsychotics, lamotrigine, and divalproex/valproic acid (2). However, experts agree that only two or three agents are effective across all bipolar phases and no one medication has achieved remission in a satisfactory proportion of patients. Because there isn’t one single pharmacologic agent that can treat all manifestations of bipolar disorder, patients often need to be on several therapies to maintain an acceptable quality of life (3).
mental health session with a therapist
Medication tolerability is another major factor to consider. Available therapies are associated with fairly significant side effects. Lithium, one of the gold standards in bipolar treatment, is associated with weight gain, kidney issues, tremors, and thyroid dysfunction. Antipsychotics can also cause weight gain and other metabolic disorders like diabetes. These side effects can be particularly debilitating for patients, causing non-adherence and relapse. Thus, balancing symptom management with a tolerable side effect profile proves to be a major hurdle for both patients and prescribers.
Finally, the time, energy, and financial burden associated with individualizing treatment can also prove to be challenging. While mood stabilizers like lithium are usually a first-line option, they usually won’t treat all bipolar disorder manifestations. The trial-and-error approach to perfecting a patient’s regimen through trying different medications, adjusting doses, and managing side effects is complicated and can lead to periods of instability as patients and providers try different options.
Conclusion
In summary, living with an invisible illness is not only debilitating but complicated by several other challenges, including accessing medications. Complexities such as a lack of treatment options, finding a suitable regimen, managing side effects, and high treatment costs can make managing these conditions difficult.
Contributed by Doctorate of Pharmacy, US
References
- https://www.health.harvard.edu/diseases-and-conditions/invisible-illness-more-than-meets-the-eye
- https://www.psychiatrist.com/jcp/addressing-unmet-needs-in-bipolar-disorder/
- https://academic.oup.com/ijnp/article/20/2/196/2629254
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