Friday, June 15, 2012

Emotional issues in MS

Emotional issues in MS are extremely difficult to cope with, adjust to and learn to accept.  I feel an entire course on adjusting to an MS diagnosis should be offered on this subject alone!  This is not to say that other illnesses, whether chronic or otherwise are not devastating, but there must be a reason why MS is the one in which there are the most clinically depressed people and the highest suicide rate.
When I was first diagnosed in 1990, I was completely lost and did not feel as if I needed to only step over a speed bump to deal with it, but felt I had just hit a brick wall.  I was completely torn apart by my diagnosis and had no idea what to do, where to turn or how to handle such a life changing illness that I fell into a deep depression where no one could reach me.  I was already suffering from low self-esteem and self-hatred so to have this on top of everything was basically too  much for me to handle and I found myself on a downward spiral to places I wish I had never gone.  The depression over my diagnosis was so overwhelming, the MS was attacking my legs very violently, my vision was fading quickly that my brain could not deal with the pain all this brought so I tried to end my life many times.  I am not proud of the way I handled the MS in my early days, but it was the only way I could think of how to do things at the time and I have grown much since then.

I feel my first MS symptom was depression and I had this since I was around 14 or 15 years old but was never treated for this condition until I was 20.  By the time I was diagnosed with MS, I was already on an antidepressant but struggled in knowing I would need to take that pill every day for the rest of my life.  I eventually accepted this, but not until my 30's, and am much happier since understanding that being clinically depressed is something that is not my fault but merely a condition that is completely out of my control.  It is no different than having MS or being diabetic. Without my medication, I will die.  Plain and simple.  One pill per day equals a healthy, clear thinking Lucy.  And honestly, no one on earth deserves to feel as I did before I was medicated.  The thoughts that would go through my head, the pain I felt inside my mind, the hatred that resided within me, are things not one person on earth should ever feel.  This is part of what MS did to me and it is really the one thing I have been able to control and for this, I am happy beyond belief.
OK, so according to what I found on the National MS Society's webpage

In addition to its physical symptoms, MS may have profound emotional consequences.  At first, it may be difficult to adjust to the diagnosis that is unpredictable, has a fluctuating course, and carries a risk of progressing over time to some level of physical disability.  Lack of knowledge about the disease adds to the anxieties commonly experienced by people who are newly diagnosed.  In addition to these emotional reactions to the disease, demyelination and damage to nerve fibers in the brain can also result in emotional changes.  Some of the medications used in MS-- such as corticosteroids-- can also have significant effects on the emotions.  

Some of the emotional changes observed in MS include the following:
-- Major depressive episodes as well as less severe depressive symptoms
-- Grieving for losses related to the disease
-- Stress and reactions to stressful situations
-- Generalized distress and anxiety
-- Emotional lability or mood swings
-- Pseudobulbar Affect (uncontrollable laughing and/or crying)
-- Inappropriate behavior such as sexual aggressiveness

"Depression" is a term that people apply to a wide variety of emotional states.  These may range from feeling down for a few hours on a given day to severe clinical depression that may last for several months.  People with MS and all those closely associated with them should be aware that depression in its various forms is common during the course of multiple sclerosis.  In fact, studies have suggested that clinical depression, the severest form of depression, is more frequent among people with MS than it is in the general population or even in persons with other chronic, disabling conditions.  Depression does not indicate weak character and it should not be considered something shameful that needs to be hidden.  Depression is not something that a person can control or prevent by willpower or determination.  In its most severe forms, depression appears to be a chemical imbalance that may occur at any time, even when life is going well.  The most effective treatment for depression is a combination of psychotherapy and antidepressant medication.  Although support groups may be helpful for less severe depressive symptoms and generalized distress, they are no substitute for intensive clinical treatment.

Persons with MS often experience losses-- for example of the ability to work, to walk, or to engage in certain leisure activities.  The process of mourning for these losses may resemble depression.  However, grief is generally time-limited and resolves on its own.  Moreover, a person experiencing grief may at times be able to enjoy some of life's activities.  Clinical depression is more persistent and unremitting, with continuous symptoms lasting at least two weeks.  Grieving is generally related to changes in self-image triggered by the disease-- for example, no longer being able to think of oneself as an athlete.  However, this process seems to be evolutionary and, with time and adaptive coping strategies, the individual can develop an altered self-image.

Grief generally resolves with time even without treatment.  However, supportive counseling, support groups, as well as an understanding and supportive environment can help the process along.

Life is full of stress and MS generally adds a hefty dose of disease-related stress to the mix.  MS is unpredictable and just anticipating the next exacerbation can be a significant source of stress.  MS can also lead to some major life changes such as loss of mobility and interference with work.. Thus the person with MS faces significant challenges in coping with a potentially stressful life.

Stress has also been cited as a possible precipitant of the onset of MS or a trigger for exacerbation.  Studies of the effects of stress on MS, however, have had conflicting results.  It is important to not fall into the trap of trying to "avoid stress," a nearly impossible task given the realities of life.  Moreover, family and friends should not make the mistake of feeling guilty because they think they may have "created stress" in the person's life.  Stress is part of the reality of living and probably the best approach, rather than trying to avoid it, is to learn how best to manage and cope with it.

Stress-management programs are readily available and have become an accepted part of the treatment of many medical disorders.  Professional counseling as well as support groups can also help in learning how better to cope with stress.
Reading all that information from the National MS Society was very overwhelming, even for me and I've been dealing with MS for what seems like a lifetime.  The best advice I can give is simply this.  Life was meant to be lived, not merely survived.  Life is difficult and stressful at different degrees for everyone and we can't allow it to devastate us to the degree of it taking away our will to live or crippling us mentally.  MS is now a part of our lives and the most we can do is learn to make room for it in our lives and accept it to the best of our abilities.  


  1. Thank you Lucy for taking the time, to write out such a heartfelt blog.
    Living with M.S. for 30+ years, is a daily challenge, others cannot always see.
    As I would say to the wonderful woman with M.S., I keep in touch with,through The M.S. society angel program, "Do just ONE positive thing a day."
    When depressed, that could be smiling at a stranger, or if home & unable to get out, brushing your teeth, emailing a friend or anyone, just to let them know how much they have graced your life.
    you just made me smile and I am very glad you wrote this blog.

    1. Thank you so much for your comment, whoever you may be! It really is the little things that can make all the difference in our lives, as in anyone's. I try to keep this mind and do my best to always say at least one positive thing to those I encounter. It doesn't take much to change someone's day from terrible to at least somewhat cheerful.

      All my best to you. :)