MS Strength

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.

I’m sitting here, glass of red wine in hand, and I’m thinking about how I love to people-watch. I’ve always been one to observe human behavior and what motivates people to act as they do. I can’t help it: I’m pretty intuitive by nature and I just naturally wonder what makes other people tick. Especially when people have MS.

Are you an MSer? Are you reading this because someone you know has multiple sclerosis? Do you work with someone who has it? Well, there are many factors that can positively or negatively impact a person who has this illness. I’m talking about stuff above and beyond the usual symptoms, frustrations, and limitations that the disease imposes. Outside things come in and shape an MSer’s reality, view point, and overall experience with MS. We as a population have such varying degrees of the disease that sometimes it’s hard to completely relate to one another, let alone with non-MSers. Throw in outside and unseen stressors and sometimes it is as though we are all from different planets (which of course we aren’t, but sometimes it seems this way.)

As someone within the MS community, I try to analyze a situation with another MSer as something that is incomplete: I don’t have the entire picture of that person and I don’t want to make hasty judgments because I have not walked in that person’s shoes. If you are also an MSer, you can probably relate to the following negative and positive impacts. And if you love someone with MS, this may shed some light on what a person with multiple sclerosis deals with above and beyond their condition and how it impacts them, for better or for worse. Helping to foster positive situations can be a gift to yourself or your loved one.

Of course these lists are not exhaustive….

Negative Impacts

• Being overworked: Having MS and needing to work because of financial needs can sap the stamina of someone who already has a limited energy supply. The same holds true for an MSer who has too many daily demands. Both situations cause a great deal of stress, fatigue, and worry.

• Not being in the workforce: On the contrary, being out of work can feel demeaning, depressing, and confusing. Msers face the challenge of making meaning out of a very unstructured, slow existence.

• Financial problems: MS can be the source of this, but it isn’t always. The loss of a spouse’s job or a new or ongoing financial burden can be weighing heavily on a person with multiple sclerosis.

• Relationship problems: Not having a partner to help with the stress and decisions of MS can be very taxing. So can having the wrong partner, having family animosity, or having problems with friends.

• Other health issues: So many MSers have problems on top of their disease. MS isn’t the only illness and dealing with other problems such as depression, migraines, arthritis, other autoimmune disorders, cancer, a heart condition and so on can try a person’s emotional stability.

• Family health issues: The families of MSers get sick too. Aging parents who need extra care and medical attention, spouses or partners who have their own health issues, and children who have health and/or learning problems can challenge MSers to stay focused and calm.

Positive Impacts

• Steady, nonjudgmental love: Having family and friends who love and care for a person with a chronic illness can bolster them and help them to stay positive and less stressed. It motivates them to help themselves and take care of their MS.

• A safe, quiet place to oneself: Everyone wants to feel calm and sane throughout the day. Having a “room of one’s own” can make someone with MS feel calm, rational, and able to cope with life’s difficulties.

• Enough money to live on: Having enough income to live modestly but happily can make all the difference between being a stressed and upset multiple sclerosis patient and a calm, grateful one.

• An occupation or outlet: Everyone needs to feel useful, wanted, and vital. Sometimes with MS this becomes a big problem, as abilities change. MSers need to have something important and worthwhile (yet not overwhelming) to do with their time.

• Help from others: This includes forms of support from other MSers, counselors, and help from family and friends. An MSer can thrive, even in the face of adversity, with a little help and encouragement. And the reduction of stress can certainly bring about positive change.

I have to tell you about my love affair with denial. Having had MS for a bunch of years now, I’ve tackled several ongoing issues that the disease has presented: fatigue, bladder and bowel problems, loss of balance, swallowing like a geriatric, and getting out the old cane for relapses when I walk like Charlie Chaplin. These issues I’ve come to accept with a little anguish and a bit of therapy, and it has been a long journey to acceptance since these symptoms often go into remission and try to convince me that I’m living without MS. I’ve also learned in the past few years that my emotional state with MS is never static: because the disease is so unpredictable, it is never safe for me to assume that I have my emotions completely figured out and that they will remain balanced indefinitely. It has taken me about three years to get the emotional situation to a point where I can accept the unknown and live my life not waiting for the other shoe to drop. Multiple sclerosis has a tendency to do this to people and as the disease progresses and more plans are thwarted, it becomes a bigger challenge to remain emotionally balanced. So I’ve recently learned the benefits of dealing with the emotional ramifications of MS with my divine social worker. I cannot express enough how much she’s kept me balanced and grounded on the continuous, unpredictable path that is MS. Just as MS continues, so does the fight to emotionally deal with it, and the methods are never permanent and can change with the course of the disease.

So here is my most recent lesson about denial, and probably one of the hardest to accept: I am trying to come to terms with the fact that I still need some sort of career to make me satisfied, but I have to let go of a choice that will not meet my needs. Anguish! MSers all know the dilemma of wisely picking and choosing what to do and what not to do. Being in relatively good shape despite my MS, I volunteer at my local library system a few short intervals a week. I love the damned library. I’ve worked there a couple of times in the past, but the multiple sclerosis always seems to get in the way. So now I am again in remission and my denial comes creeping back to me: maybe I can still get that library science degree and be a part-time librarian in a few years. Maybe this time it will be different. But the loads of books are still there, the lengthy walks to help patrons are still there, and the Family Medical Leave Act is still a difficult hurdle. So I have come to a practical, satisfying decision and I’m sticking to it: I love science and I want to continue going to school, so I’m going to take some entry-level psychology courses FOR ME. Not for a possible career, but if I continue taking the classes and a career develops, so be it. I love helping people and my local MS Society doesn’t have enough referrals for licensed professional counselors who deal with the issues of chronic illness (I’ve already inquired.) I don’t know if I will ever counsel anyone— on an hourly basis of course— but I took an intro psychology course a few years ago and loved it, and I’ve already gotten the required statistics class out of the way. One of my life goals is to earn a master’s degree. So who knows? Either way, I walk away fulfilled and with new knowledge that I can apply to everyday life. But I have to confess that the denial still lurks in the back of my mind and this choice is not without its pain.