Grappling With the Emotional Burden of Multiple Sclerosis
By Emily Mullin
Earn 2.0 CEUs for this e-learning opportunity.
April 2, 2012
Multiple sclerosis (MS) can be a debilitating disease, and along with its physical symptoms it can often be a heavy emotional burden for patients. MS can change the way people feel about themselves and alter their cognitive abilities, which can be a challenge for both patients and their caregivers.
At the onset of MS, individuals may feel confused, frustrated and uncertain when symptoms begin. After a diagnosis, MS sufferers may feel hopeless and may get the sense that they are losing control of their lives because of the unpredictable nature of the disease.
“I think, first of all, fear comes in to play initially because the diagnosis is really the unpredictable and the unknown. You must re-think who you are based on the diagnosis,” says Cindy Richman, senior director of services at the Multiple Sclerosis Association of America.
MS patients may suffer stress, anxiety, grieving for losses related to the disease, mood swings, depression, as well as aggressive or inappropriate behavior. Other emotional changes can occur in individuals with MS, such as bipolar disorder. These emotional disorders are more common with MS patients than in the general population.
Depression often occurs in patients with MS because they may feel isolated and helpless when it comes to caring for themselves and their disease. Up to half of all MS sufferers experience symptoms of depression at some point during their illness that are severe enough to warrant medical intervention.
Depression may be the result of a difficult situation or stress, such as depression stemming from urinary incontinence, which could make individuals feel socially ostracized. People with MS who also suffer from incontinence may feel like they cannot enjoy the same activities or hobbies as they did before and limit the time they spend out of their home because of bladder problems. This can lead to isolation and sadness.
MS can cause depression directly, because in certain cases, the disease can destroy the insulating myelin – a substance essential to the proper functioning of the nervous system – that surrounds nerves that transmit signals affecting mood.
Medications used to treat MS, such as steroids or interferon, can also cause depression as a side effect of the drug.
Individuals should seek help if they experience feelings of sadness, loss of energy, feelings of hopelessness or loneliness, difficulty concentrating or focusing, difficulty making decisions, uncontrollable crying, aches and pains not related to injuries, stomach ache or other digestive problems, a change in appetite, sudden weight loss or gain, headaches, insomnia, increased sleep or thoughts, or death or suicide. It is important to recognize the signs of depression because any combination of these symptoms could indicate clinical depression.
People suffering from MS often experience losses, including losing employment, the ability to walk or to engage in activities and hobbies they once found rewarding. While mourning and grieving for these losses may resemble depression, grief is a typical human experience and usually resolves itself on its own.
A person experiencing grief may still be able to enjoy the normal activities of daily life. On the other hand, clinical depression is more constant. Grief typically lasts up to two weeks, whereas depression lasts more than two weeks.
Spouses and other family members can also experiences grief for their loved one who has been diagnosed with MS. The diagnosis can be devastating for a couple or a family, and strong emotions can lead to fear, denial and sadness, all part of grief. Couples and families may worry about what the future may bring, and the diagnosis could throw your expectations for your life and career off balance.
Support groups may help patients and their family members get over the initial shock and lingering weariness of being diagnosed with MS.
Richman says her organization recommends that patients consult a therapist, especially one who has experience dealing with chronic illness to help work through these issues.
Stress is a normal occurrence in everyday life, but for patients with MS, disease-related stress can develop as a result of the unpredictable nature of the disease. Stress may manifest itself in individuals who try to hide their disease or are afraid of talking about their condition to family members, friends and co-workers. For patients with more progress MS, they might not be able to work anymore and therefore be stressed about finances and bills.
Stress can also occur if patients lose mobility and can no longer get around on their own. This makes everyday tasks like using the restroom, doing chores or going to the grocery store much more difficult and stressful. All of these potential life changes could put a significant amount of stress on MS patients.
MS patients may also feel stressed when they develop new symptoms or are concerned about health insurance and having to rely on others to help them.
Stress may be a trigger for relapses of MS symptoms because it interacts with the immune system, but studies on the effects of stress on MS have had conflicting results. Stress management programs can be used to help treat individuals with MS.
Planning can also help alleviate stress. While most people don’t want to think about their symptoms worsening, it’s important to plan for things in case of a medical emergency. In the event of a relapse, for example, think about your daily routine and how you would need to alter it during an emergency. Make an emergency contact list, and have a plan in case you need to go to a doctor’s appointment or a hospital.
“As time passes and individuals with multiple sclerosis begin to feel they recognize themselves again and are beginning to take back some control of their lives, they begin to brighten,” Richman says. “However, it is very important in terms of outcomes to develop with your healthcare provider a comprehensive care plan.”
When MS symptoms relapse, individuals will cope differently. Several treatment options are available for MS patients with depression and other emotional problems. For MS patients, several antidepressant drugs are available, but they must only be used as prescribed by a medical professional. Psychotherapy for depression is another option, and it is often used in conjunction with antidepressants. Psychotherapy, which aims to increase the wellbeing of an individual, often focuses on dialogue, communication and behavior change.
Exercise, breathing techniques and massage therapy can also be used to help treat the stress and grief that may accompany MS. Individuals with MS could try a variety of activities, from Tai Chi to yoga. Individuals dealing with MS and stress should try anything that relaxes them, including taking a bath, reading or listening to calm music.
When MS sufferers are experiencing grief or are feeling alone, it’s important that they have a social support structure to turn to. When relapse occurs or MS symptoms worsen, individuals might need help getting to physicians appointments, cooking dinner or doing other daily chores or errands. In addition, MS patients might just need a friend or loved one to talk to when they are feeling lonely.
Q&A With Cindy Richman: Investigating Fear and Hiding
Q: What is the root of fear and hiding behavior in patients with MS?
Richman: The root I think can be societal. We have a lot of trouble with illness in general in our society. Americans want to succeed, they want to be like their peers; a diagnosis threatens that. What makes it worse is that most people don’t know about or understand MS.
Q: How would a healthcare professional identify these issues or behaviors?
Richman: Identifying these underlying issues may be difficult for some healthcare providers, especially those who may not be part of an academic MS center with a variety of resources. Community neurologists manage patients experiencing a variety of disease states and it may be more difficult. In a comprehensive care center patients and family members may be questioned about how they may be adjusting to the illness and proper referrals to a mental health professional should be made to begin to deal with all of these complex issues. Depression also needs to be monitored as it is a symptom which is associated with a diagnosis of multiple sclerosis.
Q: Can you tell us about any solutions that are effective when identifying, managing and ameliorating these behaviors?
Richman: Positive solutions for these very typical issues of adjustment to the illness should be ongoing. Patients need to be concerned about managing their overall health too. A diagnosis of multiple sclerosis will not excuse you from other issues that will develop as part of your family history or genetic predisposition. Part of a comprehensive care plan would include all regular health screenings, an exercise plan developed with a physical therapist who has knowledge of multiple sclerosis, as well as comprehensive symptom management. Symptoms management can involve fatigue, bladder, pain, spasticity, as well as depression. In terms of symptom management in multiple sclerosis it is very important that patients document symptoms. The MS Association of America has developed an iPhone application called My MS Manager to assist patients with managing symptoms.
Cindy Richman serves as the senior director of services for the Multiple Sclerosis Association of America. A social worker with more than 20 years’ experience, she joined MSAA in the fall of 2000. Her work includes the supervision of a national helpline providing information and resources to multiple sclerosis patients and their care partners nationwide. In addition, Ms. Richman manages regional staff who are responsible for developing support groups and providing patient programming in all 50 states. She supervises the social service staff for MSAA's Barrier-Free Housing Program. Ms. Richman has attended neurological conferences and educational workshops nationwide, studying such topics as palliative care in the management of chronic illness, impact of disability on the family, access to health insurance and government benefits in an ever-changing environment. She has facilitated at educational workshops, teaching resource and advocacy strategies to accomplish patient empowerment to improve the quality of life for individuals with multiple sclerosis. To learn more about the Multiple Sclerosis Association of America, visit http://msassociation.org.
The Multiple Sclerosis Association of America (MSAA) is a national, nonprofit organization dedicated to enriching the quality of life for everyone affected by multiple sclerosis. MSAA provides vital programs and services, such as: a toll-free, bilingual Helpline; informative publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; a mobile phone app, My MS Manager™; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit www.msassociation.org
or call 800-532-7667.