A variety of invisible illnesses can greatly impact both the physical and mental health of individuals. Some of these illnesses are debilitating, preventing participation in the normal activities of daily living. Examples include chronic fatigue syndrome/myalgic encephalomyelitis, Ehlers–Danlos syndrome, fibromyalgia, lupus, Lyme disease, multiple sclerosis, myasthenia gravis, postural orthostatic tachycardia syndrome (POTS), regional complex pain syndrome and Sjogren’s syndrome.
These disorders disproportionately affect women and are not well understood by the health care establishment or the general community. Lack of understanding can lead to feelings of alienation and hopelessness for those suffering from these disorders.
Such was the case for Natalie (case study used with permission). Seemingly overnight, she transformed from a vivacious teenager at the top of her eighth-grade class to being virtually bedridden with fatigue, dizziness and chest pain. She visited a series of doctors in search of relief. A few months later, at age 15, Natalie’s life changed forever when she was diagnosed with POTS and Ehlers–Danlos syndrome, neither of which is curable or easily managed medically.
POTS is a disorder of the autonomic nervous system in which blood pressure, heart rate, blood vessel and pupil diameter, peristaltic movements of the digestive tract and body temperature are affected. Natalie’s Ehlers–Danlos syndrome caused additional pain — her connective tissues were weak and her joints would easily dislocate. During her freshman year of high school, Natalie was bound to a wheelchair. But as a sophomore, her dizziness and other symptoms were better controlled, so she went roller-skating with friends. She broke her wrist and injured her neck that evening, and her fall triggered debilitating migraines.
Although not widely studied, rates of suicide are believed to be higher in people with chronic or terminal illness. It is unclear if physical illness alone leads to risk of suicide or whether having an illness increases the chances of developing depression or hopelessness, which then increases suicide risk.
Painful, chronic illnesses and illnesses that interfere with a person’s everyday functioning are believed to be risk factors for suicide, especially among older adults. Some illnesses associated with increased suicide risk are AIDS, certain forms of cancer, Huntington’s disease and multiple sclerosis.
Risk of suicide is often linked with co-occurring mood, anxiety and substance use disorders in this population. However, people with invisible illnesses may not necessarily be clinically depressed or anxious; instead they may feel hopeless about their prognosis, experience real and anticipated future losses, and suffer from chronic pain — all of which are potent risk factors for suicide. The basic science of these individuals’ physical condition is not well understood, which makes developing medications to treat them difficult. Most treatments are aimed at individual symptoms rather than the root cause of the problem.
It takes Natalie three times more energy than normal just to stand because of her POTS. Even making minor movements around the house and engaging in daily routines, including eating meals and showering, can be exhausting for her and increase her symptoms. Her quality of life is similar to those with congestive heart failure or chronic obstructive pulmonary disease.
At 16, Natalie endured weeklong hospitalizations for headaches and other POTS symptoms. Medications didn’t offer relief. An honor student, Natalie missed more than 70 days of school during the last half of her sophomore year. She was no better by the end of her junior year and eventually dropped out of high school. She was behind in her work and struggled to complete projects and tests that would have been easy for her when she was healthy. “It was heartbreaking,” said Natalie’s mother about seeing her daughter transform from high achiever to high school dropout.
Natalie’s family had done everything right. They took her to see physicians, followed all prescribed treatment regimens, put her in counseling and supported her through her illness. Unfortunately, medical help was evasive and mental health care was marginal. Over time, Natalie’s friends drifted away. She couldn’t be physically active, participate in community events or hold a job. Eventually, she confronted insidious suicidal thoughts.
Working with those who are chronically ill
Many chronic illnesses are not terminal conditions, but they can severely impact a person’s quality of life for decades. For example, imagine that you have POTS. You feel lightheaded every time that you stand, and you faint several times per day. You experience neuropathic pain that feels like bees stinging your arms and legs. Hot flashes arrive without warning, and you begin to sweat. Despite possessing above-average intelligence, you have difficulty concentrating and analyzing problems. Simply taking a shower drains your energy, and it doesn’t replenish itself. Your physical isolation and illness create feelings of being misunderstood and not belonging.
These feelings only increase when you finally venture out of the house. People congratulate you on your “recovery.” Friends tell you how good you look. Distant relatives offer advice about how to get better. Even worse, you are bullied, called a faker or are the target of other derogatory comments. Your boss suggests that you would feel better if you only ate right and exercised. Even your spouse says, “Just get over it!”
Counselors should not fall into these traps when working with these clients. For someone who is chronically ill, even hearing “you look good” might be equivalent to “I don’t believe that you are really sick.” Normal niceties take on special meaning and ring hollow for those with chronic illnesses.
For most people, a doctor’s visit will result in control of their illness and restoration of their health. This isn’t true for many individuals suffering from chronic, invisible illnesses. Not only are they grieving their loss of health because of their physical condition but, often, they also feel dismissed and even traumatized by their health care practitioners.
Many with chronic illness feel ignored or abandoned by doctors and nurses. Some individuals have even been told to stop fainting or to bring down their heart rate, as if they are making choices meant to curry attention. Many physicians aren’t educated about these debilitating illnesses, and specialists in these fields often have waiting lists that are years long. Imagine how such repeated, negative experiences might erode hope for recovery and lead to suicidal thinking. What is a patient to do? In the case of those with POTS, the incidence of mental illness is the same as is found in the general population. The seemingly paranoid behavior these individuals demonstrate related to their health can be the result of medical mistreatment and neglect, and it is often justified and understandable.
Sadly, invisible illness can put even the strongest relationships in jeopardy. As days turn to months and years, the constancy of chronic illness can wear on marriages, friendships and family relationships. Missed holidays, birthdays and other social events leave loved ones feeling betrayed and wondering if the person who is chronically ill could make more of an effort to be present. Friends and family members often doubt whether their loved one is sick. Some acquaintances become confrontational with the person who is chronically ill, whereas others turn passive-aggressive. Because a person’s hair doesn’t fall out with chronic fatigue syndrome, no skin lesions appear with multiple sclerosis and no significant weight loss takes place with fibromyalgia, it is easy to forget the internal battles being waged every day by those with chronic illness.
Counseling professionals are well-positioned to address the fallout of living with chronic illness. Counseling can provide something that those with chronic illness who are feeling suicidal desperately need but are often missing — a safe place where they can be heard, validated and comforted. Most important, counselors are particularly skilled at uncovering suicide risk, advocating for underserved populations and providing clinical management of complex cases.
In Natalie’s case, she was depressed from grieving her loss of physicality, friends and school. She had found some relief through the use of an antidepressant and went to counseling regularly. In the midst of a flare, her physician switched Natalie to Prozac, which she had taken previously, without considering the fact that it might increase suicidal ideation in teenagers. Natalie never mentioned the suicidal thoughts to her family or doctor. Shortly after titrating to 30 milligrams, the 17-year-old attempted suicide.
Consider physical illness part of the problem
Many people with debilitating and invisible chronic illnesses are told that it is all in their heads. As a counselor, you may be the first person who truly listens and tries to understand what is happening in the individual’s life. Don’t be afraid to suggest that someone who has especially dry mouth and eyes (Sjogren’s syndrome), fainting episodes and difficulty thinking (POTS), debilitating fatigue that can’t be attributed to known causes (chronic fatigue syndrome/myalgia encephalomyelitis, POTS, fibromyalgia, lupus) or chronic pain (complex regional pain syndrome, fibromyalgia, POTS) should get a thorough checkup with a good physician.
Consider working collaboratively with these physicians as a multidisciplinary team. Recommend someone who is a knowledgeable problem-solver to investigate underlying physical causes for the person’s anxiety or depression. In addition, assess regularly for suicide risk, especially during transitions in levels of care, and take all warning signs and risk factors seriously. Labeling a person’s symptoms as part of a recognized disorder will often be a great relief to the person psychologically.
Physical limitations and their effect on counseling
As a result of chronic illness, routine activities can cause debilitating fatigue. Standing, walking, showering, riding in the car and even attempting to focus on a conversation can quickly exhaust those with chronic illness. As their fatigue increases, brain fog also tends to increase.
As counselors, it is important to understand and recognize the effort it takes for these clients to walk through your office door. Offering small encouragements will reinforce the proactive effort they have taken to maintain their mental health and improve their quality of life.
Also note that many people with invisible illness are particularly sensitive to light, noises and smells. This is particularly true when they are flaring. Simple gestures such as closing the blinds or turning off fluorescent lights may help them conserve their energy for their work with you. Similarly, avoiding the use of candles, strong scents or incense can be helpful.
Differentiating the physical from the psychological
When working with clients who are chronically ill, differentiating their physical issues from their psychological issues can be difficult. Consulting with knowledgeable health care specialists is essential. Taking the time to learn about a client’s chronic illness can greatly increase empathy, provide authentic understanding and help in guiding the person to proper medical care.
Counselors should be aware that the coping skills people use to deal with symptoms of chronic illness can look like warning signs for depression or suicide. For example, coping skills to manage many invisible illnesses, such as staying in bed and avoiding the shower, may be unrelated to depression or risk of suicide.
In addition, dysregulation of the autonomic nervous system causes surges of norepinephrine that can lead to insomnia, anxiety or panic attacks. A person’s lack of appetite can be related to gastroparesis (paralysis of the stomach) or other digestive motility issues. Debilitating fatigue and difficulty focusing/concentrating are also common problems connected to many invisible illnesses.
At the same time, it is important to remember that individuals with chronic illnesses that involve functional impairment and chronic pain are at greater risk for suicide, so warning signs such as suicidal thoughts and threats, previous suicide attempts and hopelessness must be taken seriously. In Natalie’s case, she had confided her suicidal thoughts to her counselor. Unfortunately, her parents and doctors were unaware of the extent of Natalie’s overwhelming emotional pain until she attempted suicide.
Follow-up care after hospitalization is critical
Pursuing inpatient hospitalization for people at serious risk of suicide can be a life-saving step. However, the current health care environment poses challenges to accessing timely, quality care when needed, even for those at imminent risk for suicide. Inpatient stays are difficult to secure, and lengths of stay are minimal at best.
Individuals often transition from an inpatient level of care to outpatient settings before their stabilization, and this is not easy for individuals with chronic illness or their families. In addition, being hospitalized for mental health problems can be further stigmatizing and demoralizing for the person with chronic illness.
The period immediately following hospital discharge is particularly dangerous for people at risk for suicide. Counselors operating from a multidisciplinary framework can mitigate this risk (with permission of the person with chronic illness) by coordinating care with hospital staff, medical specialists and key family members.
Providing continuity of care also helps with stabilization, engagement and retention in aftercare. Long-term counseling is necessary to strengthen the person’s reasons for living and to uncover the problematic situations and underlying psychological vulnerabilities that led to the suicidal crisis.
“After 12 inpatient days and nine partial hospitalization days, I’m starting to feel confident that she is on the road to recovery,” Natalie’s mother reported. Natalie’s medications were changed, and she passed the GED test in lieu of her high school diploma. She is now on the road toward college. We hope that sharing her story can help to prevent suicide attempts in other young adults with chronic illness.
Cathy L. Pederson holds a doctorate in physiology and neurobiology. She is a professor of biology at Wittenberg University and founder of Standing Up to POTS (standinguptopots.org). Contact her at email@example.com.
Greta Hochstetler Mayer holds a doctorate in counselor education and is a licensed professional counselor. She is the CEO and initiated suicide prevention coalitions for the Mental Health & Recovery Board of Clark, Greene and Madison Counties in Ohio. Contact her at firstname.lastname@example.org.
Letters to the editor: email@example.com
This was a really great article, however, please do not use phrases like “bound to a wheelchair”. This makes it sound like a person is actually physically tied to the wheelchair and cannot escape. It’s better to say that a “person is a wheelchair user”. Thank you very much!
I loved this article. You really hit the nail on the head for what chronic disease sufferers go through on a daily basis. I have severe Sjögren’s with UCTD / lupus and I often contemplate suicide, as a means to end my perpetual pain / suffering, lack of proper treatment, loss of hope and substandard quality of life.
I’m so glad that the article resonated for you. I think many people in the chronic illness community contemplate suicide at some point for the same reasons you mentioned – to stop the pain and other factors that decrease your quality of life. It is important to maintain hope – there is research being done right now that could increase quality of life for people living with chronic invisible illnesses like you are. One silver lining of the pandemic is that many people are being diagnosed with Longhaul syndrome (in numbers that are attracting attention) and the National Institutes of Health are spending money on better understanding these issues that will help our whole community.
I hope that you will consider joining a support group online if you haven’t done so already. The connections that you make there can increase quality of life separate from your physical illness – being with people who “get it” makes a huge difference. Sometimes you may be asking for help, but other times you might have the opportunity to mentor someone who is not quite as far into their journey of chronic illness.