Vandals in the Palace – Living With Auto-Immune Disease

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Currently, there are more than eighty illnesses identified and labeled ‘auto-immune disease’ in which the defensive mechanisms of the body turn on the body, itself. These range from over 20 million Americans stricken with Type 1 diabetes to an estimated 400,000 with multiple sclerosis to a few thousand per year in some of the more esoteric illnesses. Rheumatoid arthritis, systemic lupus; the list goes on and on. They can range from annoying to immediately life threatening and you have probably never heard of most of them. The truth is that whether you realize it or not, you know someone whose life and lifestyle are being manipulated by one of these diseases as you read this.

For every one of these illnesses there are many different symptoms, levels of affect and prognosis but several common threads link them all. (a). They attack women more often than men. In some cases, up to 90% of the victims are women and no one knows for sure why. In multiple sclerosis (MS), the one I’m most familiar with, the incidence of women over men developing the disease ranges from 66% to 75%, depending on which ‘expert’ you believe. In my experience, two-thirds of the people who develop MS are female. (b). All the auto-immune diseases are, at this point, incurable although there are world-wide medical studies going on to find a cure or at least a way to put them into remission. There are treatments to help control symptoms, increase the length of time between exacerbations or flare-ups or shorten their duration. The main reason, I believe, that medical science has not been able to find a cure for MS, lupus, rheumatoid arthritis and the rest is…(c). They don’t know where the hell they come from.

Current theories suggest that combinations of factors are required to place a person in harm’s way for auto-immune disorder. The most likely at this time seems to be a combination of genetic pre-disposition and a ‘trigger’ of some sort. With MS, studies point to a viral trigger sometime during or just before puberty. One theory is that the varicella herpes virus that causes chicken pox is a possibility. The latest and most promising agent is the Epstein-Barr virus which causes infectious mononucleosis in children and young adults. This would fit the picture for me since I had mono when I was 12 years old. However, my sister also had mono at the same time and never developed multiple sclerosis which would lead one back to some genetic pre-disposition. I suppose the bottom line is that there is no ‘bottom line’. An auto-immune disease is not something one ‘catches’ but rather develops in the body over a period of time. The internet is rife with names, symptoms, treatments, advice, etc. all under the umbrella of auto-immune disease but the one big question that isn’t answered is ‘Now that I have this disease, how is it going to affect me as a person, my life and the lives of my loved ones?’ The answer to that question depends, at least to some degree, on you.

Noting that the two letters in the middle of ‘life’ are ‘if’, we are all aware that a certain amount of uncertainty is inherent to existence. The addition of any illness, especially a chronic, debilitating and possibly fatal disease to the mix brings the degree of uncertainty and anxiety to a whole new level. When the specter of MS came into my life in 1982 I was thirty-five years old and thought I had the future locked, loaded and dead in my sights. I was young and strong with a good job, a lovely wife and a promising ten year old son. After the first symptoms appeared in the Spring, I went into the hospital for a week’s worth of tests that definitively showed nothing. On the day I was released, the neurologist came to my room and said that I might have MS but he didn’t really think so. I asked him what I could expect if it turned out that I did have it and he told me that, in a best case, the symptoms would disappear over the course of a few weeks and I’d never be bothered with it again. Feeling reassured albeit still somewhat skeptical, I asked about the worst case scenario, to which he replied “In a worst case, you’ll be totally bedridden in a year and dead in eighteen months.” See what I mean by ‘uncertainty’? He reassured me with the fact that the actuality would probably fall somewhere between those two extremes and we parted company. Six years later, I was ‘officially’ diagnosed with multiple sclerosis. That is the final thread that connects all auto immune diseases, uncertainty.

So, what comes next? What do I do with this? Conventional wisdom speaks to the ‘stages of grief’ with denial being the first on the list. While I agree that there is a grieving process attached to the diagnosis of any incurable disease I feel that the first step on the ladder should be fear… Not panic but a reasonable amount of fear basted with all the knowledge you can acquire. The thought that ‘if I ignore it, it will go away’ is valid in some cases because it will…Taking you with it as it goes. Lingering too long on the ‘denial’ step of the grief ladder could be fatal. I’ve said before that we all fight our dragons with a different sword and knowledge is our best weapon against any autoimmune disorder. For myself, I chose the anger phase to begin my battle toward some form of acceptance.

While it might not work for anyone else, I used anger focused on the disease itself instead of on myself and the people around me. I personified the MS into a beast trying to rob me of everything I loved. Sight, physical strength and endurance, mobility, a joy of living and far places and even life itself were its targets and the disease was mine. I threw everything I could find at it including a rage to live every day to its maximum. I joined a support group and, after finally reaching the acceptance phase of the process, became a Peer Counselor. I culled through doctors until I found a neurologist I felt I could trust and communicate with, and then followed his orders including his suggestion to live my life and make every day count for something.

Keep in mind that no matter the diagnoses, you have resources to help you. All of the major autoimmune disorders have support groups and national organizations to help keep you informed. Medical science is constantly striving to find medications to increase length and quality of life. Indeed, there are treatments available today that were unheard of ten years ago with more in study every day. There are internet forums, information sites and even chat rooms that were unavailable only a few years ago. If fear and depression become a problem, which they very well might from time to time, there are psychologists and other mental health professionals specially trained in the treatment of patients with chronic disease. Although some medical doctors might not agree, your own mind with its will to live and refusal to accept, any more than absolutely necessary, the limitations your particular disease might seek to impose on you is one of your greatest weapons and it, too, must be kept sharp and strong.

Also keep in mind that not becoming part of the problem makes you part of the solution…That solution is to remain a functional human being; the irreplaceable ‘you’. You might have an illness, but as long as you don’t allow the illness to have you, there’s always hope for another good day. As long as you don’t become part of the process, there’s always a chance. Until you give up, you won’t become another ‘victim’.

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