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Sunday, December 7, 2014

MS: Do You Self- Disable?

When we receive our diagnosis of MS, most of us experience an intense identity crisis. MS causes us to re-evaluate our entire self image and re-assess our lives. Most of us immediately associate our diagnosis with disability and decline, imagining ourselves in wheelchairs or bedridden.

As we now know, this is not always the case.

We may live for years, decades, or even our entire lives without ever becoming severely disabled, but we have no way to predict our disease course. The problem with MS is the vast difference between individual disease processes. One individual may become incredibly, severely disabled, and others may have minimal symptoms. The unpredictability of this illness causes an internal struggle.

I have a tendency to cripple myself emotionally with a fatalistic outlook. I find myself sinking into thoughts such as "I am ill, I am heading for complete disability, I am using a cane now....what will I be like next year? I might as well quit." I can truly be my own worst enemy, and now I am starting to really recognize this self-defeating behavior. No matter how severe our disability, we may inadvertently make things seem worse than they actually are.

I call this behavior "Self-Disabling." The disease may cause physical symptoms, but my negative self-talk can be even more of a challenge. I find that I must constantly challenge the voices in my mind, the ones that tell me I am a neurological patient with an incurable, disabling illness. 

These terms, those such as "disabling", "incurable", and "progressive," can really do some damage psychologically to MS patients. Those words conjure terrifying images and strike fear into each of us. This place of fear and dread is the dark place we must avoid being trapped in. This dark place is not where we need to be. This dark place is not reality, it is a location that exists only in our minds, and we cannot allow ourselves to be stuck there.


This fear and dread causes me to often think "why doesn't this disease just do it's damage and be done already?" It is the slow, subtle, fluctuating nature of MS that pushes us to the brink of insanity. The slow nature of the illness causes us to put ourselves in a place of illness and disability, even if we aren't truly there at the present moment.

If an individual suffers a traumatic accident, losing a limb or suffering from paralysis, this is a sudden loss of function. This individual is left to recover from the injury, knowing exactly from the first moment what the new limitations will be. For example, if the left arm is no longer useful, the individual learns to compensate with the other arm. Following the injury, there is only recovery to look forward to, and if not recovery, then adaptation to the new disability.


With MS, the loss of function is fluctuating and changeable. One day, we may have to learn to live without the use of our right hand. However, we may regain this function down the road, or we may not. We can try to strengthen the use of our left hand, but then again...we may lose the function of the left hand next. I learned to cope with drop foot of my left foot by being fitted for a brace. This helped tremendously.....until I lost strength in my right leg a few months later.

The unbearable unpredictability of MS is the aspect that pushes us to the edge psychologically. This unpredictable beast is the cause of the negative self-talk and fear we all live with daily. How do we rise above this place of fear and dread? How do we live a lifetime with a dangerous, unpredictable enemy living right within us?

My conclusion is that we need to remember that all human beings are living with unpredictability. We are not the only ones. The nature of life itself is unpredictable and ever changing. Nothing stays the same, does it? We are in a constant state of change, MS or not.

Try to remain in the moment. Get still, quiet, and calm....breathe. Look around at where you really are at this moment. Think of the wonderful, happy things you have in your life and be grateful. Find something to be thankful for, no matter how small. If you are reading these words right now, you are fortunate. There are some who can no longer read the written word. If you are understanding this post, be grateful. There are some who don't have the cognitive ability to understand. If you are reading this from a computer, be glad! Most of the world is too impoverished to afford a computer and internet service, or they are kept from reading online posts by a restrictive government.

Don't self-disable. MS is a disabling condition, but we can certainly do far more damage with our own negative inner voices. Maybe you have more ability than you give yourself credit for. Push yourself a bit....maybe you will be surprised at the abilities you still have right now.


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