MS Strength

I don’t have a great deal on my mind……about my own MS. Shoot: I think I just dangled a participle, but anyway……..My mind doesn’t automatically turn to the culprit when I’m in remission. Although it has greatly impacted my life, it still does not dictate a great deal of who I am. And this could be because I am writing from the perspective of someone with a moderate case: I am in the middle stages of middle-of-the-road, neither-mild-nor-progressive, waxing-and-waning multiple sclerosis. Ask someone with progressive MS what they think about the condition and the answer could be completely different. It’s all a matter of perspective.

My non-MS friends see my condition from another perspective: as among one of the challenges our group faces. My good friend was recently diagnosed with lupus, and so she lives with a new perspective and she has completely changed my view of my own condition: I am not the only one with ongoing problems and this knowledge opens the door from a lonely, isolated existence to one of similar understanding. I’m so glad for this. A couple of my other friends face ongoing addiction problems and so their understanding is a bit different but nonetheless helpful. One does not always need a duplicate perspective to empathize. My sister-in-law gives me the biggest laugh when our bowel difficulties— she has the autoimmune condition ulcerative colitis— act up. Two people with very different personalities can still enjoy the spoils of a shared perspective.

In terms of the world at large: I never want to imagine that my multiple sclerosis is any bigger than the dot that is our planet within our solar system, within our galaxy, within the entire universe. The perspective of Earth from a million light years away is imperceptible. In space and time, my disease is but a blip on the radar. Back here on Earth I’d rather worry about the two recent American journalists who were wrongly imprisoned in North Korea. They certainly have bigger concerns than I do. Or tread lightly when I read Eli Wiesel’s Night, and know that I am safely tucked in at bedtime. These grave views throw my own perspective into perspective.

How do doctors view this chronic condition called MS? Do they fully sympathize with patients, or do they merely look for scientific evidence and concrete solutions? Would the perspective of an MS doctor afflicted with cancer change his demeanor towards his patients? I shudder to think of that multiple sclerosis doctor who absently treated me, all the while looking at life from his own distorted angle. And yet I didn’t see life from his exact perspective (and how could I?) I am now able to indulge him his inaccuracy. As for the people who represent those with multiple sclerosis: can we come to a shared, mutual perspective? Will we ever agree on the same values, needs, priorities, and programs? Can you— will you?— ever see through my mind’s eye? Will I ever know your true intentions and hopes for a world free of MS? I cannot currently see through your lens.

Will my own image of multiple sclerosis change? Well, sure. Everything changes and angles slant and rotate. Nothing is ever exactly the same, nor should it be. The knowing is all: I set my lens wide for perspective and deep for understanding.

Joan at A Short in the Cord recently mentioned that she sought the guidance of a life coach through the Multiple Sclerosis Association of America. First of all, I didn’t even know that the hub of this association exists right in my area: Cherry Hill, NJ. Secondly, I didn’t know that anyone associated with MS was available to instruct us on what to do NEXT. I’m presently considering enlisting their aid.

I’ve wrestled with identity problems for the past five years or so, as I stopped working in my fast-paced health career (radiology) and began searching for part-time, low-stress work. I’ve had the advantage of my husband’s income to keep us from having to move in with one of our sets of parents, but in today’s world there are always more and more monthly bills, taxes, and unexpected medical expenses. So the advantage has in no way been an excuse for me to sit back and do nothing. To this day we still need whatever I can contribute (social security payments et al), and then some. I always wonder about stay-at-home moms (or dads) who elect to do this.

The search for my new career— and therefore a big piece of my identity— has been ongoing. What can I realistically do? Will I have to settle for something “just to pay the bills”? In the past (pre-social security days) I did online customer service work to help us stay afloat. But I like the right to the “pursuit of happiness” that lies within our Declaration of Independence. I’m an independent, career-minded girl who wants to pursue something fulfilling and joyful. My quest within the past five years has led me to part-time library work, which has made me so happy and fulfilled that I’ve questioned why I ever became an ultrasound tech in the first place. Like finding the perfect mate: there is a seamless fit. But because of my own long relapses, maintaining the identity of a library staff member has become all but impossible. In the past year I’ve returned to a volunteer status with our library system. It’s much safer, both physically and emotionally. I can live with it because I still identify as one who makes a difference in this public service realm. That’s what’s so great about libraries: there are few boundaries between the ranks.

On the home front I’ve sought writing opportunities, since writing is one of my biggest passions. I’ve identified myself as a part-time freelance writer who specializes in health topics. Seems to encompass my areas of interest and experience. But lately I’ve found myself looking to branch out into other areas of writing because, to be honest, I’m burning the candle at both ends with the health writings: this site and and the MS Life column. I love both, but I don’t want to soley identify myself as an MS writer, much as I don’t want to soley identify myself as an MS patient. So I’m now in active pursuit of non-health writing work. It’ll come; I just need to be more patient.

In my personal life I have a hard time identifying with non-MSers. In my safe little haven I can imagine that I’m normal and can do everything everyone else can, but when I get out into the world with those who don’t think twice about having kids or careers or non-stop days, I am sorely at a loss to identify. Reminds me deeply that I have MS and that I am at home, tenaciously looking for my own purpose. In the same vein, I cannot always identify with other MSers because we are all so different in backgrounds, disease statuses, and present situations. Although I have an easier time relating to this second group of folks. We have the common thread of navigating the frightening neurological unknown.

I haven’t a clue whether I’ll identify myself as a mother, as a successful and fulfilled writer, or as a personally-fulfilled MS patient in the near future. The road is long and winding and all aspects of life are never completely identifiable.

A few years ago I found that my MS was becoming more of a burden for my loved ones as well as for myself. I was missing out on so many ordinary things: work, family outings, time with friends, holiday get-togethers, and so on. Plans were constantly being modified or cancelled. One of the biggest ramifications was the loss of my driving abilities for eight weeks when I had to rely on family members and friends to get me to my job and take me to run errands. And the loss of a steady income caused my husband and me to accept financial help from others. Tough break and it all weighed heavily on my mind as I tried not to feel guilty about all the trouble my multiple sclerosis was causing in my life. I began therapy around this point and learned a few valuable lessons about guilt. I wrote this article a couple of years ago for Suite101.com, and the information still holds true today:

“Multiple Sclerosis Guilt”

A very real and harrowing side-effect of multiple sclerosis is guilt. Those with the disease feel it for a variety of reasons: they can’t do all the things they once could, plans often have to be cancelled due to the condition’s unpredictability, people don’t understand the “silent” symptoms and consider MSers lazy, and the list goes on. On the flip side, those who are affected by someone with MS harbor their own guilty feelings, often because they feel helpless or punished by the disease’s effects. Reality checks as well as coping strategies can counteract needless bad feelings.

The first form of guilt, something the MS sufferer contends with, can manifest itself for various reasons. People with multiple sclerosis can have a very slight to rapid decline in mobility. Whatever the level, bad feelings can emerge because the patient finds himself or herself less capable than before. Even a small decline reminds a person that he or she might need other people’s help for what seem like simple tasks. A big problem that stems from the unpredictability of this disease is the guilt associated with cancelling plans. It is so hard to keep a normal schedule when MS rears its head whenever it wants. Multiple sclerosis sufferers worry that others “just won’t understand.” Another problem is that silent symptoms, or those only apparent to the sufferer (tingling, heat sensations, pains) can make the person with MS appear lazy because they look fine on the outside. Perhaps the hardest guilt-trip to get over is the question, “Did I do something to cause this disease?” A lot is still unknown about multiple sclerosis, including its definite origins.

Caretakers, family, and friends are no less sabotaged by guilty feelings. They are upset that they cannot do anything to stop MS. Helplessness breeds guilt. It is difficult to watch a loved one deteriorate, even a little bit. While watching this happen, another sort of guilt can set in: family and friends are fine, while the multiple sclerosis sufferer is being attacked by his or her own body. This is much like the emotion felt by a person who is spared in an accident, while someone else is badly injured. Maybe the secret guilt of being angry with an MS sufferer is the hardest to bear: limitations and burdens caused by the latter can breed resentment on the loved one’s part.

Guilt needn’t be an out-of-control emotion. Sometimes a reality check is necessary. Regardless of the levels of disability, both multiple sclerosis sufferers and their loved ones need to realize that this disease is life-altering. There are not always quick fixes and problems are to be expected. People can learn to stop beating themselves up over uncontrollable circumstances: coping strategies for everyone include therapy and/or support groups (both in-person and online) to learn techniques for dealing with MS. A great way to find in-person support is to contact a local hospital. Depending on the level of disability, a person with multiple sclerosis can gain the support of occupational and physical therapists (for better independent functioning), friends and family, and spiritual groups. Family and friends can do the same by accessing caretaker support groups as well as at-home care for their loved ones. As some say, guilt is a wasted emotion, and controlling it is a wise step towards overall better health. Find out more about guilt derived from chronic illness in the article Guilt in Autoimmune Disease by Elaine Moore.