|Someone once said that Multiple Sclerosis (MS) is not just an illness of individuals, but an illness of the whole family. Single people who do not have close family ties may object, but I think that, in general, this is a true statement. When a father or mother, spouse, son or daughter is diagnosed with this illness, the losses go beyond those of the one with MS. There is an equally profound set of losses for the people who care for and depend upon the person whose life is so dramatically changed.|
|In my years reading MS bulletin boards on the Internet and sitting in on chats, I’ve read many moving stories of families coming through for the one who is diagnosed. These families experience painful losses simply because they are close to the one with MS. Unfortunately, I’ve also read many painful stories of how badly families cope and how much pain they cause with any number of misunderstandings, misinformation and superstitions.|
|MS can be devastating to everyone touched by it. People with MS can be terribly disabled, needing help with eating, bathing, dressing, or they can look fine and have only rare difficulties like mild fatigue or numbness that may be visible only to themselves. Symptoms can fall anywhere in between. How individual loved ones react at any point in the diagnostic process or during the progression of the illness covers an even larger spectrum.|
|I want to cover both the ways loved ones can adjust to the symptoms of MS and some problems for families with children living with a parent who has MS. While I don’t expect there will be much that can be done to protect people with MS or their families from some of the initial reactions that are both normal and sometimes inevitable, there are many ways that family members can learn to cope.|
|Initially, most people with MS are frightened and often sad and depressed. Getting MS is a great loss, greater for some then for others, but never easy. Families share these reactions. Seeing a spouse, a child, a parent, lose their energy, or lose a certain amount of functioning, is very painful. One mother of an adult child with MS prayed “Why can’t it be me?” Children and parents alike may wonder if the illness came because of something they did.
Each family will marshal its psychological resources in ways that are most typical for them. Some will chase the foremost experts. Others will pursue diets or other alternative treatments. Some will be stoic or fatalistic. As long as each of the many styles families develop lead in the direction of learning to know the disease and accommodating to it, these varying styles do not matter. If there are conflicts or disagreements within the family around these coping styles, the conflicts will show themselves at this time, as happens during all times of stress. Some families are more open and in the early stages of the illness will be free to talk about it with their extended community. Others may be more secretive and will want to keep the news to themselves. Sometimes this is for important work related or other reasons, sometimes for reasons of irrational fear. Most of these styles, however, do not do damage to the person with MS, nor to the eventual goal of adjustment.
What is key to good coping, though, is moving toward accepting the diagnosis and acting to accommodate to it. Gathering information from all available sources; finding physicians and other care givers familiar with MS; adjusting one’s schedule to match the new reduced level of energy — these and more are ways of actively and consciously working to cope. They are rarely unhealthy.
Some reactions, however, are more accurately described as dysfunctional. The two that are the most obvious and painful are denial and desertion. Denial, as many of us know these days, is acting on the false belief that something does not exist. We hear of it most often when a drug addict or alcoholic denies that they have a problem. “I don’t have a drinking problem, I can stop anytime I want to” or “I’m not abusing speed, I just like a little boost now and then.” When applied to MS this kind of denial can exist in the diagnosed individual but is also seen in the people around him or her. “He isn’t sick. He’s just too lazy to work weekends.” “She says she can’t do it because of her MS, but I just saw her doing that same thing yesterday without a problem, so she just wants attention.” Some family members deny the existence of the problem, even to the point of refusing to learn the name of the illness. They may speak disparagingly of the person suffering from MS rather then to accept their own painful reaction to this loss.
As a permanent coping style, this kind of denial is not typical. But in the beginning of the process of a dangerous diagnosis it is not terribly rare to see it in healthy people. As Elizabeth Kubler-Ross was able to show, denial is not always a pathological thing. But after diagnosis, particularly after months or years of symptoms, the use of denial is clearly the sign of a failure to cope, and invariably does damage to the successful adjustment of the person with MS and has negative consequences for the whole family.
Even more shocking is when people with MS are deserted by family or spouse. Some spouses are unapologetically narcissistic and say “I can’t live with a sick spouse” and leave. Others refuse to make accommodations, sometimes making the lives of a spouse with MS so unpleasant that divorce appears to be more attractive then continuing to tolerate the well spouses neglect or abuse. Other spouses sometimes try valiantly to cope and accommodate, but for some reason can never find a balance in which their own needs are met, eventually poisoning relationships which then don’t survive. More frequently when MS leads to divorce, it was the final blow to a bad marriage that might have been long overdue for a dissolution.
Less frequent is the real desertion of parents or siblings, but emotional desertion is less rare. Some families refuse to accept the need for any accommodation to the illness. Often an outgrowth of denial, they may belittle such things as the need for cool ambient temperatures at family gatherings, the need for scheduled rest, the inability to do things like prepare food or shop, or even the difficulty that travel brings. Such things can be experienced as a desertion by the one with MS.
Healthier, but still problematic, are overreactions to the illness. The uninformed expectation of early disability or death can lead families into some awkward interactions. Doing too much or not enough for the person with MS can also impair good adaptation to this illness. Such reactions are inevitable for some families and not at all rare. Regular reminders about the subtlety of the illness and the fragility of the fine line people with MS need to walk to maintain their energy may be sufficient to correct these tendencies.
The best way to react to this illness is too directly and honestly evaluate what it does to the person who has it and to the family he or she is in. This requires education and it requires communication. It will affect both what the family does together and what the family does to help the person with MS.
MS is complicated, variable and subtle and does many different things to the person with MS. Each of these things may have an impact on the family, and so a family’s reaction and the direction of its adjustment will be just as variable as the course of an individual’s MS. For some people with MS the results of the illness may be primarily physical — it may prevent lifting a child or it stops the PWMS from tending the house or yard. The person with MS may not cook as often or as elaborately. He or she may have to skip meetings, resign committees, or cancel the season tickets. For others the pace of life might be changed — there may fewer or shorter family gatherings, or hand ball might be replaced with golf, or golf with video games.
Family members may be recruited to do things to help. How this works can also vary significantly. For the small minority who advance to the most disabling levels of impairment, it is help with walking, eating, and personal care. For others less help is needed, but some help may be greatly appreciated and may extend the ability of the person with MS to participate comfortably in important activities. This kind of help includes fetching drinks or snacks or other things to save him or her a trip up and down stairs; doing a greater percentage of the household chores either temporarily or permanently; cooperating with a reapportionment of household chores in order to give the more sedentary ones to the person with MS, and many other things. For some the only help that is needed is the understanding that sometimes they will have to rest instead of be involved in family activities. Some subtle ways of helping can also develop for particular individuals. For example, someone who has a primary symptom of emotional lability during times of fatigue may need only to have the family increase their tolerance for occasional outbursts, or the family may need to serve the function as an auxiliary monitor to tell the person with MS that they are showing signs of fatigue and send them off to bed. These are but a small sample of what family members do for loved ones with MS.
During all of these activities there are many points at which misunderstandings can happen. Take for example the person with MS who believes that there will be unpleasant consequences if he or she does not carry a full share of the chores at home. She may push herself unmercifully to get these things done only to be too exhausted to attend an important family event that other family members feel is much more important then these chores. Others in the family might prefer to do more then their share of the housework so that the person with MS will have energy left to have fun.
Another example would be of families who do not understand the full effect of fatigue. If the person with MS and his or her family does not understand the need of an energy conservation plan they will regularly be surprised by a collapse caused by fatigue. “Now what’s wrong? You were fine this morning.” These fatigue exacerbations (temporary increases in symptoms caused by fatigue) can also be misunderstood as real exacerbations, causing unrealistic panic in a family.
Families that have children have the difficult task of communicating why Mommy or Daddy can’t do what she or he might like. For toddlers and young children, simple explanations are best. “No, I can’t pick you up. Mommy is tired.” “Mommy is sick and has to rest today you can play with your toys here where Mommy can see you.”
Families also have to make different kinds of adjustments to raise children. Stay-at-home Mom’s will take care of children of this age differently- a family that once looked down on the use of a tether for a toddler may now find it to be essential if they want to allow a child to enjoy the outdoors when Mommy can’t run after her. Child-proofed rooms and homes may be more painstakingly prepared in order to save the person with MS the extra effort of pursuing a little one to keep him safe. Child care may be used more, not just to allow both parents to work, but sometimes to allow a stay-at-home parent to get needed rest. For families who are willing to forego conventional roles, Dad’s with MS may find staying at home to be a more effective use of their limited energy then working, or Mom’s with MS may find a sedentary job that pays for day care a strategy to extend her energy.
As children get older, better explanations are required. By age six they should have a reasonable grasp that Mommy, or Uncle Joe is not always well and sometimes needs to have special consideration. By eight or ten, they can understand that the disease has a name and may ask questions about it. In the teen years they may be angry at the disease for the deprivations it causes in the family and may focus that anger on the one who is sick. Each of these possibilities will interact uniquely with both the type and progression of the MS as well as the child’s normal development and the normal family dynamics that all families have. Unlike for adults and families in general, denial can be adaptive for children at certain stages of development, though it is important for their ongoing development that this denial is challenged when it means that they neglect the feelings of others or their own responsibilities.
For children of all ages it is important to be attuned to the questions the child has. Different children react in different ways to having MS in the family. Frequently children can be a great help if the family has to provide help for a parent. But they also have their own fears, sometimes unstated. “Will Daddy die?” “We all will die someday, but Daddy will live as long as anyone else his age and will be with us for many years.” “Will I get it?” “We can all get sick sometimes, and since this is in the family, you might have a chance at getting it, but the chance is still very low, so you will probably not get it.” “If Daddy gets mad at me, does he hate me?” “Daddy is feeling very tired and needs to be given rest time so he doesn’t have to be so grouchy.” “Why can’t Daddy play with me?” “Daddy can play with you from his chair, but he can’t run around in the yard with you.”
Like with changes in the activities of the person with MS, family activities can also be changed. The person with MS may be the designated reader for a toddler, for example, or instead of walks together, watching movies together may be the activity of choice for a family with MS. There are many ways to cope and each family should be able to find them with effort and systematic attention.
Like with many other things, children need to have information about MS repeated. They may ask the same questions over and over again. This is appropriate and should not be discouraged. The more a family talks about MS, its consequences and the plan it has to cope with it, the better that plan will work. It has long been known that over-learned reactions and coping strategies work best during times of stress. Since the symptoms of MS often cause substantial stress in the family (and may also result from stress) making family coping a conscious, practiced thing can only serve to reduce the unpleasantness of MS symptoms.
There are many more variations on the theme of family coping that could be examined. The variations of MS are endless and how a family copes is even more variable. But some basic things can be understood. Denial rarely helps and desertion never functions positively in this disease. Understanding the disease in general and the specific symptoms and patterns the family member with MS has is crucial to coping in a family. Communication and full disclosure of the effects, consequences and prognosis of the disease is not damaging to healthy family coping, though the information should be adjusted to the match the age of the children.
MS is more then an individual illness. It is damaging to the whole family. Coping with MS is rarely an individualistic thing. It involves changing behavioral patterns that affect loved ones as much as the person with MS. Like with each individual, however, families also cope with this disease and can usually proceed to enjoy a normal, satisfying family life despite its presence. And while no one would ever wish MS on any person or family, the process of coping and adapting to this illness, like with any other hardship, can serve as a bonding, growth producing experience that can enhance the maturity and development of both children and adults alike.
A recent email reminded me of an issue often neglected or misunderstood by people with MS (PWMS) – pain. In 1993, when I was diagnosed, there were still some medical professionals who said MS does not cause pain. Today, fortunately, neurologists and other physicians are accepting the nasty truth that it does. MS does cause pain directly, indirectly, and sometimes very subtly.
Most directly, MS pain is a result of damaged neurons which interfere with the communication between the body and the various pain centers in the brain. All areas of the body are connected to the brain by long neurons covered with a myelin sheath. In MS the myelin sheath, which works like the insulation on electrical wires, is attacked by the body’s immune system causing the malfunction nerve cells to which they are connected. People with MS can get pain because signals do not arrive from the body to where they are expected in the brain. In the same way pain can result when signals from the brain may not make it to parts of the body.
Faulty signals to and from the brain can cause pain in ways best illustrated by phantom limb pain — the pain amputees experience in the missing limb. While there is no arm or leg to experience pain in phantom limb pain, the brain may interpret the absence of any signals from the missing limb as pain. Because MS damage may similarly prevent the brain from getting a proper signal, the brain can interpret this as pain. This is also how neuralgias occur — the brain doesn’t get the information it expects and interprets the absence as something that is not really happening – burning, itching, numbness or pain.
Similarly, the faulty signals can instruct muscles to act in ways that cause pain, tightening up either steadily (spasticity) or suddenly (spasms). The misfiring or absence of a calming signal from the brain can allow pain to persist or grow. Sometimes the absence of these calming signals from the brain can allow the pain receptors to get hyper-sensitized so that even the smallest sensation may be experienced as painful. People with MS have also reported this affect with sensations of touch and temperature. This is the opposite of having no feeling at all. As with every other MS symptom, this kind of pain can become worse during an exacerbation, when fatigued (fatigue exacerbation), or when overheated.
Pain of this sort is treated with both medication and pain management techniques. Physicians often prescribe Baclofen or Neurontin among many other medications. Tylenol or another over-the-counter pain killers might be all that is needed. At other times, or for other people, even prescription medications may not be completely effective. For this reason, it is important for PWMS to work patiently with a professional to find the most effective approach.
Techniques that don’t involve medication include massage, acupuncture and other kinds of body work. There is both experimental and anecdotal evidence that they may reduce pain. Physical therapy can also effectively reduce pain when the pain results from damaged or de-conditioned soft tissue. Fatigue management is particularly helpful for pain caused by malfunctioning neurons. Since it seems that some MS impaired systems work better when rested than they do after exertion, keeping optimally rested can help. Going beyond the sensitive threshold of “too much” for a PWMS often results in increased discomfort.
A second way pain can be worse for PWMS is over-worked muscles. If the signals from the nervous system are inefficient, muscles may not tense and loosen in sync. This can mean that more effort is required during a simple motion then if everything was coordinated. Similarly, if there is one muscle in a muscle group that is not getting activated, the other muscles have to overcompensate. Either way, it can cause pain.
Treatments for this kind of pain are the same as for anyone else – heat (as tolerable) and ice; OTC pain relievers as pills or ointments; and more intensive attention from professionals as needed. Medications for neurological pain will not be effective in this situation.
MS can also lower the pain threshold so that people with MS are more sensitive to pain. This is subtle and takes some explanation.
The healthy brain works in the background juggling multiple signals, suppressing some and bringing others to conscious attention. The sensation of pain is managed in this automatic multitasking system. The body sends constant signals to the brain. Some involve motion, others touch, others heat and cold. Some are signals of pain. The brain avoids bringing these signals to the forefront of attention until they are strong enough to cross a certain threshold. Pain signals have to be strong enough to override the brain’s focus on other tasks in order to gain attention.
This is best shown in athletes. When a basketball player continues to play while hurt, she suppresses the pain and focuses on the game at hand. After the game when actual play no longer demands attention, the brain allows the pain signals to come through. During the excitement of the game, the pain sensations are ignored or suppressed, perhaps not even noticed. Throughout this time the brain is getting signals of pain, but it overrides them with signals having to do with motion, strategy, and the effort to be competitive.
With MS the capacity to multitask is reduced or sometimes eliminated altogether. In a brain that is already bypassing MS lesions and, perhaps, suppressing faulty signals coming from misfiring nerve cells, the demand to suppress or ignore pain may simply overburden the system. As a result pain sensations can become impossible to ignore. This is increased as fatigue worsens. Something as simple as background music may overload the brain’s sensory management system and may seem highly annoying, even painful. Little pains of modest or even insignificant importance can demand the same attention from the brain as deep bruises or lacerations.
Paying attention to pain and pain management are important factors in the care of people with MS. For most people with MS, simple things are enough to manage pain: proper fatigue management; managing stress; the use of simple pain relievers; and an increase in comfort measures such as careful stretching, massage, or other body work. For others, prescription medications or more aggressive behavioral techniques — hypnosis or a systematic program of progressive muscle relaxation — are needed. Medications are often part of the strategy for managing pain. Regardless of the level of pain, PWMS need to pay attention to it.
And to complicate matters even more, MS may be blamed for pain that comes from another cause. New pain or patterns of pain should be addressed with a professional. While chest or back pain can be MS related, it also can be caused by cardiac difficulties. Unusual bumps, bruises, and pain can be related to MS or to blood disorders. Muscle aches and pains can be arthritis or troublesome medication side effects. Pain is a signal that says “pay attention.” We should always listen to our bodies’ signals.
Pain can come directly or subtly from MS, it can be a secondary result from the difficulties of having MS or it can be a result of some other injury or problem. Regaredless of the source, it requires attention both from the people who have MS and from those who care for them.