My last post in Italian language was about MS and emotional reactions to the diagnosis.
This post instead describes emotional changes that are thought to result, at least in part, from the damage to the nervous system caused by MS. In other words, these changes are considered by MS experts to be part of the disease process itself rather than a reaction to the challenges it poses.
Moodiness & Irritability
People with MS report feeling more sensitive and moody, and family members may find their loved ones to be quick on the emotional trigger, cranky, irritable or unpredictable in their emotional responses to things. Knowing that this moodiness can be a symptom of the disease may make it easier for everyone to understand and tolerate it. But the moodiness isn’t comfortable for anyone, so it’s important to let your doctor know about it, particularly since irritability may be often a symptom of depression. A healthcare professional such as the Occupational Therapist with expertise in MS can teach strategies for managing uncomfortable mood changes and recommend an appropriate medication, if needed.
While everyone has occasional days of feeling blue or down, major depressive episodes (called clinical depression) are different. For reasons that are not yet fully understood, clinical depression is more common in MS patients than in the general population or in other chronic illnesses. In fact, more than half of people with MS will experience a major depressive episode at some point over the course of the disease. Milder forms of depression are even more common.
MS experts believe that depression is a symptom of MS as well as a response to it. Researchers have found evidence that immune system changes and damage in specific areas of the brain may contribute to depression in MS. Further support comes from the fact that depressive episodes can occur early or late in the disease, regardless of a person’s other symptoms or their level of disability. But it’s important to know that people who are in the midst of an exacerbation (also called a relapse or attack) or who have a personal or family history of depression are at greater risk for a depressive episode.
Depression is not a sign of weakness: it is a medical condition that can and should be treated because it interferes with about everything including a person’s ability to function comfortably in daily life. Living with MS can be challenging enough without the added burden of a depressed mood.
Depression continues to be under-diagnosed and under-treated in people with MS. There are four primary reasons why this is so:
1. Several depression symptoms overlap with common symptoms of MS. Therefore, it may take a psychiatrist or psychologist with expertise in MS to sort out the various symptoms and confirm the diagnosis. Unfortunately often psychiatrists and psychologists don’t fully understand the complexity of Multiple Sclerosis. It is important then share these feelings with the MS medical team.
2. People with MS who are depressed may appear more irritable or moody than tearful or sad, so it may not be obvious to them or to others that they are depressed.
3. Many people are too embarrassed or ashamed to admit these kinds of feelings to their doctors, as though they are signs of weakness.
4. There is a common, but incorrect, assumption that anyone with a chronic, unpredictable illness like MS would or should be depressed and this is definitely not the case. While everyone with MS needs to grieve over whatever losses the MS may cause, and everyone has days of feeling down or discouraged, not everyone experiences five or more of the symptoms listed for days or weeks at a time.
The good news is that depression is a treatable problem. In the worse case scenario a combination of psychotherapy and antidepressant medication is the most effective treatment strategy, but research has also demonstrated that regular exercise, geared to the person’s abilities and limitations, has a positive impact on depression.
Uncontrollable Laughing and Crying
I love to think that all the MS-fighters are a bit crazy. Indeed, episodes of uncontrollable laughing or crying are another symptom that can be caused by MS. These episodes may consist of an emotional reaction that feels exaggerated or out of proportion to the situation or to how the person is actually feeling. Or, the laughing or crying may occur independently of how the person is feeling. In other words, a person may find him- or herself laughing inappropriately at a funeral while actually feeling sadness and loss, or unable to stop crying while watching a comedy. This often happens to me! These episodes can start unpredictably, last for several minutes and feel difficult or impossible to control. Individuals with MS and their family members understandably find these episodes frustrating and embarrassing, and employers may find them unacceptable. Fortunately, uncontrollable laughing and crying affects only 10 percent of people with MS. It can usually be managed with medication, so it’s important to bring this problem to the attention of the healthcare team.
MS is a complex, unpredictable disease that can pose significant emotional challenges for even the strongest, most resilient people. It will probably take time to find the coping strategies that work best for you. These basic suggestions may serve as a good starting point:
Appraise your MS with realism and flexibility: Allow yourself to grieve over whatever changes or losses the MS brings yours way. In time this will free you to create new options for yourself. Some people (including myself) stubbornly try to do all the things they did before — in exactly the same way — regardless of their symptoms. A realistic approach means letting go of some activities (or learning how to do them differently) and/or taking on new ones that are more feasible — and thus more enjoyable and rewarding.
Share your concerns and feelings with others: For even the most private person, it’s important to have at least one trusted individual to talk with about the challenges of living with MS. While this is often a spouse or partner, relative or friend, many people also find it helpful to have someone else, perhaps a counsellor or spiritual advisor, who is less personally involved and therefore more objective.
For those who live in the UK, the National MS Society, a doctor, nurse, social worker or other professional can provide referrals. Most people find that talking with someone from time to time lets off steam, motivates them to generate options, and helps them develop perspective. Most people also talk to themselves, and how they do it can affect their feelings in a positive or negative way. Some other write like I do. For example, a shift from saying to one self that “This situation is impossible” to saying “This is difficult but I think I can handle it” is already a major step toward a healthier life.
Find an exercise regimen that’s right for you: A regular exercise program is a key strategy for maintaining emotional health. Many studies have shown a positive link between exercise and improved moods. And the long-term benefits of exercise on the heart, lungs, bones, nerves and muscles apply to people with MS just as much as they do to the general population. I like doing Yoga as many of you know already.
Exercise improves fitness and muscle strength, and reduces depression and fatigue in people with MS. Participants in exercise programs not only enjoy an improved sense of well-being, but experience improvements in bowel and bladder function as well. For more information about the role of exercise in MS, talk with your doctor, nurse or physical therapist (Physiotherapist) about what kinds of exercise would be best for you.
Build relaxation into your schedule: Together with aerobic exercise, programs to enhance physical and mental relaxation, such as yoga, Tai chi or meditation, can be extremely helpful. Other techniques, such as massage, progressive relaxation and using a mantra, may help to establish a sense of well-being. All of these are proven tools for reducing daily tensions. Medication to relieve fatigue or depression may be needed to break the cycle once it is established, but awareness of the cycle is the first step toward dealing with it. Relaxation can be part of a good Yoga routine.
Plan on having some fun: Recreation is often the first thing people eliminate when they need to cut back on regular activities because of fatigue or a too-busy schedule. Putting responsibilities at the top of one’s priority list is understandable, but recreation and taking part in social activities can reduce stress, refresh spirits, and contribute to overall health and well-being. People who are able to laugh and enjoy humour generally feel better about themselves and manage their lives more effectively. Humour goes a long way toward taking the sting out of some of the more challenging aspects of life with MS.
Invest in your spiritual beliefs: Faith is a very important part of many people’s lives. I am not a very religious person, but studies of people with chronic illnesses have found that those who have a strong religious or philosophical belief system do better than those without such a source of support. Even the simple act of regular attendance at spiritual gatherings appears to improve coping, perhaps because it gives those individuals a feeling of belonging and a sense of group support. And for those who choose not to attend meetings of this kind, support groups and other social networks may meet the same need.
- 300 Tips for Making Life with Multiple Sclerosis Easier, (2nd Ed.) by Shelley Peterman Schwarz. New York. Demos Press, 2006. 128 pp.
- MS and Your Feelings: Handling the Ups and Downs of MS, Allison Shadday, LCSW. Hunter House, 2006. 256 pp.
- Multiple Sclerosis: A Guide for Families, (3rd Ed.), Rosalind Kalb, PhD, ed. Demos Medical Publishing, 2006. 256 pp.
- Multiple Sclerosis for Dummies, by Rosalind Kalb, PhD; Nancy Holland, EdD, RN, MSCN; and Barbara Giesser, MD. Wiley Publishing, Inc., 2012. 384 pp.
Picture by ©Kathryn via Flickr