I often receive comments telling me how “courageous” I am fighting my medical problems. I even had one doctor tell me I was “a tough old bird” (doubtless a turkey). I never know how to respond to these comments. I don’t feel particularly courageous or special.

Let’s face the truth, it doesn’t take any particular brand of courage to get sick. It can happen to anybody at any time. If the illness is serious enough you either muddle through it or die but either way it doesn’t require any bravery and it certainly doesn’t make you someone special. In short, if you muddle through people tend to label you courageous or inspirational and if you die they tend to ignore your faults while they eulogize you.

I’ve had multiple sclerosis (MS) for over twenty years and necrotizing (or hemorrhagic) pancreatitis for more than 5 years. During that span we (grandma Oddball and I) have attended many support groups and met many other people from all continents that have similar serious medical problems. From our experience I can tell you that people with serious medical problems are just like everyone else. Some you like, some you don’t like, some are obnoxious, some are shy, some are smart, some are nuts, some are honest, others are con artists, etc. To reiterate, as a group we’re nothing special. While our medical conditon alters our perspective on life basically, in all other respects, we’re all just like everybody else.

No, the really special and courageous people are the spousal caregivers that stick with their vows. The toll on their lives is huge (and often accompanied with guilt). It’s a sad and unfortunate fact that most spouses cut and run when they learn that their partner has a serious medical problem that requires a huge commitment of time and care. They just can’t seem to handle the situation nor are they the only ones. Friends and family members often don’t understand MS and can sometimes be unintentionally cruel.

I clearly remember the young lady (probably in her 30s but we’re older so she was young to us) whose sad story perturbed me no end. Her mother was not only in denial but she was constantly picking on her daughter by accusing the daughter of being lazy. The young lady not only had to cope with severe MS fatigue but she had to also had to cope with a family attitude that her illness was all mental and if only she’d get up off her butt and exercise she would get well. The only understanding and comfort the poor young lady received was unfortunately from strangers. The stress alone worstened her condition.

And it’s not just family members that are ignorant. Some doctors are just as ignorant. I’ve met many MS sufferers that have been also told by doctors that their MS symptoms were all in their mind. In fact they’ve often been accused of being hypochondriacs by doctors. Sometimes they’ve gone through half a dozen doctors before being sent to a competent neurologist which discovered the truth. I ran into to some of this when I applied for social security. The examiner wanted me to see a psychologist! I had to first explain that MS was a physical disease before I could proceed with my application.

All this background is just to partially illustrate just how special are those spouses that stick with their mates for the long haul when the going gets rough. In fact, rarely are they recognized. As a group I can say that the kindest and most caring people I’ve ever met are spousal caregivers. Many, such as the gentleman that threw modesty to the wind in order to enable his wife to travel and enjoy her life as best she could, sacrifice their own health and comfort for those they love. Caring and devoted he was constantly by her side supporting her physically and emotionally whether it was carrying her everywhere her wheelchair couldn’t go or accompanying her to the restrooms to help her use the toilet. Now that’s a special and quiet courage. Muddling through an illness doesn’t seem so courageous by comparison.

I’m privileged to add grandma Oddball to this list of special people. We’ve been married over 40 years and for the majority of that period I’ve had MS so when people start telling me how courageous I am I just have to look at grandma Oddball to know the truth. And the truth is I’m a little embarrassed at these comments and still haven’t figured out the best way to respond. I’m not special but I am extremely lucky because a long time ago a really special lady agreed to marry me.

Tags: Multiple Sclerosis

This entry was posted on Wednesday, August 19th, 2009 at 7:01 am and is filed under Multiple Sclerosis. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

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