Presented on June 14, a survey published in the journal Annals of the Rheumatic Diseases by the Danish Rheumatism Association investigated over 900 people with rheumatic and musculoskeletal diseases and found that:

10 percent had thoughts of suicide in the previous four weeks.The pain caused 58 percent to feel that life is unmanageable.69 percent reported poor sleep made their pain symptoms worse.Two-thirds rarely or never feel fully rested when they wake up in the morning.36 percent take painkillers to improve their sleep.

British Survey Highlights Lack of Mental Healthcare for People Living With Rheumatoid Arthritis

The second survey, from the University of London, looked at 1,620 people with rheumatoid arthritis or adult juvenile idiopathic arthritis (AJIA). The study reports that:

25 percent experienced anxiety or depression.50 percent of that 25 percent never received a formal mental health diagnosis.One-half of the RA respondents and one-third of those with AJIA who had either clinical levels or a formal diagnosis of anxiety or depression had never received any mental healthcare or support.

Which Comes First: Depression, Pain, or Sleeplessness?

As stark and unambiguous as these percentages seem, the interplay between RMDs, pain, mental health, and sleep disturbances is very complex. “Is the depression due to the experience of having RA or having pain? It is very important to tease those things out. Mood disorders in association with any chronic health issue can be due to pain, loss of identity, the way other people perceive them, or loss of job or intimate relationships. We have to be careful about blaming one thing altogether on it,” cautions Linda R. Mona, PhD, a licensed psychologist at Inclusivity Clinical Consulting Services in Rancho Palos Verdes, California, and a consultant to CreakyJoints, the digital arthritis community for patients and caregivers worldwide. The connection between depression and RA has long been identified; Patricia Katz, PhD, professor of medicine and health policy at the University of California in San Francisco, published research on it in the journal Arthritis & Rheumatology in the 1990s. Dr. Katz adds, “It is recognized now that depression is an inflammatory condition itself, so is the depression due to RA, or does RA predispose people to depression?”

Lack of Mood Disorder Diagnosis and Support Is a Critical Problem

Katz was also part of a team that published research in December 2013 in the Journal of General Internal Medicine that found that “despite the high prevalence of depression with arthritis, screening for depression was performed at few arthritis visits, representing missed opportunities to detect a common, serious comorbidity.“ If the connection between RA and mood disorders has been established — even if it isn’t quite clear how the connection works — why then are patients still not getting help they need? According to Katz, again, it is a confluence of issues:

Physicians’ visits are usually short. A patient goes to a rheumatologist to deal with RA problems, so maybe there isn’t time to talk about mental health. Primary care physicians may not link depression to rheumatoid arthritis.Patients may not disclose that they are sad or depressed because they fear the stigma or are ashamed and embarrassed.Many doctors just don’t ask about mental health. If physicians do ask, their response may be just to prescribe medication, which people with arthritis may not want to take because they are already taking so many. These patients may not be offered alternatives to medication or talk therapy. (Behavioral therapy and exercise can help.)Health insurance may not cover mental health issues.

“This is an unmet need, which probably leaves the patients on their own to figure this out. However, people who are depressed often have problems of motivation. This may mean that they will remain untreated and, in some severe cases, there may be more suicide ideation or actual suicide. This is another wakeup call that people need more comprehensive psychological care,” says Katz.

Will Physicians Incorporate Mental Health Screening Into Regular Appointments?

Since patients may be hesitant to speak up, doctors need to be proactive when talking to them. “RA is a complicated disease and its impact on patients varies widely — with many subjective, or ‘invisible’ symptoms often taking a more heavy toll than physical manifestation of disease. Listening to the patient perspective, understanding how that person is impacted by disease, can help address the symptoms that matter most to that patient,” says Seth Ginsberg, president and cofounder of CreakyJoints.

What Else Can Doctors Do to Help People With Depression Come Forward?

Dr. Mona adds, “Tell your patients that mental health is as important as physical health, those domains interact, that you want to talk about their daily lives, their ability to do regular activities, their sleep. When you integrate those questions in a clinical visit, you show that you are a provider who is open to talking about psychological issues. Even if the patients say they are fine or good, you have identified yourself as a physician who is open to talking about it if they need it in the future.”

What People Living With Rheumatic Diseases Can Do

Speak up! Don’t be afraid or ashamed to talk about the impact of the disease on your quality of life, says Ginsberg. Use as many explicit examples, such as things you may be prevented from doing, or feelings that you have as a result of your condition. Write them down in a list so you won’t forget if you get flustered. Ginsberg says, “Advocacy is all about education and communication. Patients need to educate their healthcare professionals about the burden of their disease. If you can’t do it, bring a caregiver or loved one who can speak up on your behalf.”