Experiencing Grief With Multiple Sclerosis

It's okay to feel vulnerable

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Most of us associate grief with the loss of a loved one. However, grief may also occur as the result of having a chronic illness like multiple sclerosis (MS), in which a person loses various physical and/or mental abilities.

Whether you are newly diagnosed or have been living with MS for many years, it's important to understand that grief is a completely normal and natural reaction.

Understanding Grief

When understanding your grief with a diagnosis of MS, it's perhaps best to consider two phenomenon from which grief stems: loss and vulnerability.

Loss

Grief is a reaction to loss, and there are so many losses that accompany MS. Besides a potential loss of physical abilities such as walking, balance, and vision, there is a potential loss of cognitive skills, such as thinking, memory, and concentration abilities.

MS fatigue, or lassitude, is often described by those with MS as "having the flu," or "dragging around an anchor." This feeling in itself is another loss, as it represents a diminishment of your energy, muscle strength, and brain power.

Furthermore, MS can contribute to the loss of friendships, other meaningful relationships, and even employment. You lose your physical and emotional well-being, sense of self, and the way you once imagined your life.

Vulnerability

While everyone's MS experience and symptoms are unique, a vulnerability to the disease itself—the lack of control—exists for everyone. This "MS vulnerability" means that you never know exactly how you will feel from day to day or the unpredictable course your disease will take. This can be a source of tremendous grief.

As with loss, MS-related vulnerability can lead to deeper vulnerabilities. This could be because you are hiding your disease, or you are not letting yourself dream or strive for life goals because of your limitations.

Experiencing Grief

Grief is a complex experience, but a normal one for those who have a chronic illness like MS. While there are five stages of grief, know that not everyone goes through each stage—if you do, the stages do not necessarily progress through the order in which they are listed. Everyone experiences grief differently.

Five Stages of Grief

  • Denial and isolation
  • Anger
  • Bargaining
  • Depression
  • Acceptance

Keep in mind that these stages provide only a general framework for what the grieving process may entail (the stages have even been disputed by experts for years). It's possible you may experience none or all of these stages.

Instead of focusing on the nuances or restraints of this model, use it as a source of comfort or a context for understanding your feelings. For example, if you are feeling anger for having MS, you can be reassured that anger is a normal and natural emotion in the grieving process and that you are not alone.

In addition to the fact that there is no rigid manual or model for grief, the timing for how long grief lasts varies from person to person.

For many people with MS, grief is more of a chronic, up-and-down process—your feelings may compare to the grief you experience when a loved one dies, and it may be a drastically different feeling.

Again, there is no right or wrong way to grieve. Some people with MS report that they grieve with each new MS relapse that arises. Others report that they grieved in the beginning when they were first diagnosed, and then later when a major MS-related disability arose, like losing the ability to walk or work.

Grief vs. Depression

It's important to understand that grief is different from clinical depression, although "depression" is considered one of grief's five stages.

The key distinguishing factor is that with grief, a person's sorrow should not be all-consuming and it should resolve over time. In addition, other symptoms like weight loss, agitation (seen by others in how you react, move, and speak), feelings of excessive guilt, or thoughts of suicide are indicative of possible clinical depression and not grief.

If you are experiencing any symptoms of depression, be sure to see your doctor for an evaluation. Depression is common in MS and can be a symptom of MS itself and not just as a result of the stressful factors MS places on your life.

Coping

While right now, your grief may feel like a huge weight on your shoulders, a nauseating ache in your stomach, or a dark rain cloud that never leaves you, be reassured that grief does get better with time for the vast majority of people.

In addition to letting time pass, there are things you can do to heal yourself as you grieve. While not an exhaustive list, these strategies can help you develop self-compassion and build resiliency—two attributes that will help you to cope with the losses and vulnerabilities imposed on you by MS.

  • Keep a journal to record all your thoughts, worries, fears, and frustrations.
  • Try to exercise each day to release natural endorphins, even if it's just a long walk with a friend or pet.
  • Indulge in small comforts like grabbing a cup of coffee with a friend or watching a favorite movie.
  • Surround yourself with loved ones and/or consider joining a support group, like your local chapter of the National MS Society.
  • Engage in mind-body therapy like mindfulness meditation or yoga.
  • Change your way of thinking and living by learning and embracing positive psychology.
  • Consider occupational therapy to build self-confidence and independence.
  • Seek out guidance from a grief counselor or self-help group.

A Word From Verywell

Grieving is a normal, albeit difficult, process. When related to MS, it's a process that often repeats itself with each new symptom or disability. Try to be gentle with yourself while you grieve, and continue to embrace your emotions instead of repressing them. If your grief is worsening or preventing you from performing your daily routine for two or more weeks, please see your doctor. While you may seek out guidance from a support group or counselor for managing your grief, depression requires the care of a mental health professional.

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