|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.
One of my patients once told me that he pours his pills out in the morning and sometimes thinks he should douse them with milk and eat them with a spoon. He didn’t have Multiple Sclerosis (MS), but he did have several other chronic diseases that required many medications. He faithfully took his pills. Not everyone does.
Many people with MS have opted out of taking recommended medications. When I was first diagnosed in 1993, an insurance study made the Internet rounds claiming that, over the course of a lifespan, people with MS had no greater use of medical services than the population at large. This study was done well before we started getting bi-annual MRIs and $50,000 a year prescriptions.
Many people with MS still don’t use much medication. They make do with Tylenol for aches and pains, and perhaps they take one or two other pills to manage specific symptoms. They may add a few vitamins and a couple of naturopathic remedies that make sense to them.
Some people are downright phobic about taking medications. They endure debilitating fatigue, pain, cognitive difficulties, and work disability, refusing to use the medications that is often helpful in managing MS symptoms.
What lies at the root of this behavior? Neurologists and patients report positive results with pills and other treatments for symptoms. Research shows the effectiveness of immunomodulating injections and, now, oral medications. Still, some resistant malcontents refuse to take advantage of the great promise of modern psychopharmacology.
It would be easy to blame this on superstitiousness or the absence of education. But this would be both unfair and also inaccurate. There are numerous reasons why people may be shy of prescription medications. The benefits aren’t always that great, the side effects can be considerable, the results are sometimes subtle and slow to develop, the expense is frequently very high, and health care professionals don’t always prepare patients in ways that are effective.
In this country there is a long history of distrust for modern medicine. Indeed, it wasn’t until the discovery of the sulfa drugs, aspirin, and penicillin in the middle of the 20th century – less than 100 years ago – that allopathic (what we know as conventional) medicine started to move ahead in its contest with homeopathic (now also known as alternative, naturopathic or complementary) medicine for the hearts and minds of the people. Before that time, the popularity contest between two types of medical treatment was neck and neck. Allopathic doctors advocated large, aggressive doses of medication to fight disease at a therapeutic level. Homeopathic doctors advocated tiny, unobtrusive dosages of various substances to support the body’s natural reactions to disease. Sometimes they also recommended supplements and herbs. It was the specific effectiveness of large doses of medication for particular illnesses and the gradual development of successful combinations of surgical and chemical treatments for a large variety of illnesses that makes allopathic medicine standard practice.
But the homeopathic philosophy never went away. The sordid history of what allopathic advocates did to their patients before discovering effective treatments is probably part of the root of why this gentler, less intrusive style of treating illness has maintained its grip. But it is more than that, because the early excesses continue today with the high tolerance conventional allopathic medicine has for the side effects patients are expected to endure when illnesses are being treated. That the cure is sometimes worse than the disease is more frequently true than the medical community would like to admit.
The allopathic branch of medicine is thriving because its cures do work. Heart disease, cancers, infections, failed organs, medical problems of all sorts have been cured or managed. Until very recently life expectancies have lengthened every decade. There is no question that aggressive medicating for serious illness is a winner.
Does that make those who are medication-phobic foolish? On the contrary, it may make them cautious, even wise. MS is a clear example of the difficulty that allopathic approaches have for unconquered diseases.
The benefits of medication for MS aren’t always great. There are effective medications to treat fatigue – Amantadine, for example. Yet the improvement an individual gets from the use of the medication may be minimal. Indeed, many people don’t benefit at all, while others get tremendous help. Provigil and Nuvigil are in the same category. Some get help, others don’t.
The now ten immune modulating drugs (drugs aimed at slowing the progression of the disease) are an even clearer example that help from medications isn’t always ideal. For most of these medications initial studies indicated that there is a roughly 30-40% decline in progression as measured by the increase of brain lesions, but with a wide variety of individual responses. One exception is more effective, but has a life threatening illness as a possible side effect. More recent studies have also lowered the estimates of effectiveness as compared to the earlier studies.
It is a particular concern when a prescription medication causes unwanted and unrelated problems. Amantadine can make people nervous or jittery, as can other medications for fatigue. A popular medication for muscle spasms — Baclofin — can cause muscle weakness and lethargy, which is the last thing someone with MS wants. Each of the autoimmune medications has its own unpleasant side effects as well. One bad experience with a serious side effect can put a person off medicine for a long time. Shared stories of bad side effects can multiply misgivings.
In many medications the positive effects may be subtle and slow to develop, while the side effects may appear sooner and may actually peak in the first week or weeks of treatment, only to disappear or at least become more tolerable later. In my experience this has been most clearly illustrated when patients use antidepressants. Using most antidepressants, the patient may experience at the outset whatever side effects he or she is going to get. For the first week or two, or even three, the only effect a patient might get from a new medication may be some form of discomfort. It is only after persisting for a period of time that the beneficial effect actually starts to show.
This is even more dramatic with the use of immune modulating medications for MS. These drugs slow the progression of the disease. There is no expectation of getting better. They are taken only in the hope that the pace of MS will slow.
What does it mean when a person with MS starts taking a new drug to slow MS progression and also starts getting more frequent exacerbations? It may be that the natural progression of this particular disease was due to start getting worse. The medication may actually be preventing even more frequent exacerbations. Or the medication might not be working.
On the other hand, what does it mean exacerbations stop? It could mean that the medication is working well. Or it could mean that the natural progression of the illness has slowed.
For any individual there is no way to know for sure. In practice, physicians often switch immune modulating medications if there is continued activity and are loath to change medications if there is reduced or little activity. The danger here is that the medical professionals may themselves be a tad superstitious, operating as if these medications are more effective and predictable than is supported by the double blind studies.
But generally when a physician prescribes one of these medications, he or she is making a bet that in 20 or 30 years their patient will be better with this medicine than without it. They make this bet on the basis of research and sound clinical experience. Nonetheless, it is still a wager on the future, a wager that has frighteningly unpredictable consequences.
In the circumstance of these drugs to reduce exacerbations, the patient (or insurance company) spends 40, 50 or even 60 thousand dollars a year on this gamble, sometimes more. Other medications used for MS symptoms are not as expensive. Some may only cost a dollar or two a pill, which still can add up to a great deal over time. More than that, people with MS often take multiple medications. It is not unusual for someone to be taking a pill or injection to reduce the progression of the disease, medication for muscle spasms, medication for fatigue, a pill to improve gait, medication for depression and/or anxiety, with an added pill to reduce urinary urgency and an occasional sleeping pill all at the same time. It is easy to reach thousands a month in medication costs. Those without insurance and unable to work will certainly not be able to take all of these medications. Even for those with insurance, the co-pays on multiple prescriptions can put a significant dent in the family budget.
So with all of these financial and psychological barriers to taking medication, why do people with MS take medication at all?
Typically because they desperately want to do something for their illness. Often people with MS have an image of people they have seen stretched out in geri-chairs in nursing homes, glassy eyed from pain medication, incontinent, unable to move, unable to see and barely able to speak. They have the memory of the fact that Kervorkian found proportionally more people with MS to kill than with any other disease. They fearfully imagine the canes, the walkers, the wheelchairs, the long, boring hours of waiting for someone else to do something that they used to be able to hop up and do for themselves and they are quite reasonably terrified. They get muscle spasms that keep them awake. They get annoying numbness. They have to run to the bathroom at the spur of the moment and every time they do this, it reinforces their hopes that there might be something, anything, that can be done that will delay or prevent things from getting worse. So, they take their medicine.
Often it works. Continued studies of the older injectable drugs suggest that as a group people with MS are benefiting. There is no reason to suspect that the newer oral medications will be any less effective. Treatments for the symptoms of MS are even more successful. Baclofen does reduce muscle spasms. Amantadine and Provigil do work for many people to reduce the cognitive and physical aspects of MS fatigue. I.V. Solumedrol can stops many MS exacerbations. The antidepressants can reduce symptoms of depression for the 50 percent of people with MS who get depressed and may also help with fatigue. Anti-anxiety medication can be helpful for the 90 percent who have difficulty with anxiety. There is reason to hope that any particular individual with MS will be able to go outside and take a walk on his or her 65th birthday.
Yet every single one of these medications can have significant side effects. If a patient is not properly prepared for these side effects and has not examined the cost/benefit of the drug, a side effect can ruin the potential therapeutic effect. In other words, the person with MS can be scared off by something that may not, in the big picture, be a long lasting or significant aspect of the drug.
Treating professionals must be aware of the attitudes and learning history of their patients when prescribing medication. Simply handing out a script and expecting that a patient will call if there are problems is not enough. This sort of practice actually amounts to a barrier to the successful treatment of a chronic disease.
In prescribing, it is important to remember that among the population at large, the old battle between allopathic and homeopathic styles of treatment is not resolved. Patients want a good reason why they should take something so potent that it may cause collateral damage in their bodies. They want to understand what a medication is going to do for them. They also want to know that their doctor is looking out for more than just what prescription to write.
There are a great number of things a health care professionals can suggest for people with MS that goes beyond taking medication. These non-intrusive interventions (without side effects) can make a great difference for any person with MS. Suggesting massage, encouraging the continuation of a trusted supplement, providing the name of a psychologist or counselor, having support group information available — all of these things tell the patient that the battle against this disease is not going to be won or lost on the basis of one medication even though the medications can be a formidable ally in the lifelong battle that is MS.
It is particularly important for a physician to take time when introducing a medication that may have difficult side effects. Some patients need to digest the idea that a medication might help, but at a cost. There is nothing wrong with a patient asking to think about a new potential medication. He or she may come back in a month or even six months after processing the idea and perhaps still will have more questions.
People with MS are usually quite aware that they are the ones who ultimately bear responsibility for their own health care. It is they who decide whether or not the costs outweigh the possible benefit.
But not every area of the world has physicians who can properly walk patients through with aplomb and warm support. Many times physicians expect to be used as consultants who provide the information and technical services to patients who are then expected to think about a medication’s various costs and benefits on their own. It is at this point where a person with MS may want to bring other people in on his or her team, a trusted family member, friend, or perhaps consulting a psychologist, a nurse, or a social worker with knowledge about MS. The National MS Society has a multitude of resources in this area and an MS navigator may be able to provide information or referrals that are critical when it is time to make decisions.
Regardless of where a person with MS falls in the philosophical continuum between allopathic and homeopathic remedies, each persons history for how and why they have arrived there merits respect. The barriers of cost, potentially limited effectiveness, side effects, and poor preparation may be overcome, but they will never be overcome without the effort of the person who is getting the treatment. There are treatments that are often effective. It is up to each individual with MS to decide if and how these treatments can be best used in their own effort to manage this very difficult disease.
By J. Lamar Freed, Psy.D.
Everybody gets the blues and almost everyone understands when someone says, “I’m kind of down today” or “I’m a little depressed.” Those of us with MS have a higher chance of knowing this first hand. But sometimes it steps beyond “down” to downright depressed and for us, this is a complicated matter. The number of ways we can get depressed might shock you. Fortunately there is also help.
The entity that psychologists call “clinical depression” goes beyond a few bad days. To be clinically depressed you have to have symptoms from a long list, including, but not limited to: depressed or irritable mood; reduced interest in pleasure and activities; significant weight loss or gain; insufficient or excessive sleep; unusual agitation or, alternatively, complaints of fatigue or loss of energy; feelings of worthlessness; inappropriate guilt; diminished ability to think, or an inability to make decisions; and finally and perhaps most dangerously, recurrent thoughts of death or interest in/plans for suicide.
The problem with this list for people with MS is that it overlaps with symptoms MS can produce, particularly symptoms produced by fatigue. This makes it easy to misdiagnose MS symptoms for symptoms of depression. What is to blame? MS reduces energy. So does depression. Depression reduces the ability to experience pleasure. So does MS lassitude. MS can cause weight loss or gain either because of difficulty eating, or because of increased sedentary behavior. MS can cause both too little or too much sleep. MS fatigue can make people sluggish physically and mentally, making decisions difficult. Even suicide rates for people with MS go beyond the population baseline.
Research says fifty percent of people with MS get major depression. So when we have to cope with MS in real life, it is critical to learn how to distinguish between the temporary or recurrent emotional symptoms of MS from the signs of a full blown depression.
Sometimes with MS the first signs of the disease are the symptoms that most resemble depression. People I’ve chatted with in MS chat rooms have sometimes objected when their neurologists won’t consider a diagnosis of MS until they’ve “passed” an evaluation by a psychologist or psychiatrist in order to rule out depression. But, given that depression is far easier to treat than MS, any sane neurologist would rather find depression than MS. Having a mental health professional involved early in the diagnostic process does no damage and could prove valuable.
While MS is not depression, it can certainly make people depressed. Those of us with MS have often endured remarkable personal and social losses because of this illness: job loss; loss of favorite activities or hobbies; the desertion by friends or generally reduced social activity. Even divorce is more frequent for people with MS. Like one wife said: “I didn’t sign on for this.” Even the mere threat of losses like this is enough to depress many of us in the early months and years after a new diagnoses.
Losses like these can depress people who don’t have a chronic, possibly debilitating disease like MS. This complicates things. As one person put it, “Just because you have MS doesn’t mean you won’t get sick.” With the right genes, family history and personal trauma’s any one of us can get depressed unrelated to MS. Just as with colds and flu, an independent episode of major depression is a nasty complication.
But with MS it’s more complicated. With MS, depression can come when areas of the brain related to the regulation of mood are damaged, resulting in irrational mood changes. These mood changes can range from depression to anger to euphoria. In the context of the real life circumstances of a person with MS, these emotions may make little sense, as though they come from out of the blue. If we expect depression to resemble the ‘normal’ depressions anyone might get, we will look for ‘normal’ causes of depression. Any one of us might blame events in the environment for these irrational changes. This is dangerous. Blaming a spouse, boss, family member or some unrelated event for a mood change that comes only from random damage to the brain can lead to painful consequences There are enough stresses on our social support networks already. For us it is particularly important to carefully evaluate the cause of any emotion. Getting a coach — a therapist, counselor or other dispassionate and reliable advisor — will likely be valuable, particularly in the early years of diagnosis, before you understand the impact MS has on your emotions.
But wait. It’s more complicated still. Depression can also be caused by the medications we are given for our symptoms. There are now over ten medications used to treat the underlying cause of relapsing-remitting MS, several of which have been associated with depression. We can also get depressed or agitated from medications used to treat the symptoms of MS. This means that it is important to talk to your doctor about any change in mood and review the impact of the drugs you are taking, weighing the cost of their side effects with the benefit of their treatment effect.
To top it off, fatigue — something most people with MS experience — can cause a temporary pseudo-depression that looks and acts just like a regular depression. If your poor self esteem, hopelessness, demoralization, irritability, or even self destructive feelings happen only for a short period of time, and go away with a good night’s sleep or solid day of rest, your depression might simply be fatigue. Like with our sense of balance, or increased numbness, sometimes people with MS use changes in their mood as a sign that they need to slow down and rest.
Researchers have puzzled over the questions of how and why MS and depression overlap to such a great extent. For any one of us, however, this question, while important to note, is less important than the question of how we treat it.
Treating depression in any of its forms is almost always helpful. Unlike MS, there is a large range of effective things that can be done. Medications work about seventy percent of the time. Psychotherapy or counseling is equally effective, but it can not only help with the symptoms of depression, but also help distinguish what kind of depressed symptoms we have and how best to cope. For regular depressions psychotherapy can have an effect that lasts far beyond the number of sessions it takes. For MS related depressions, therapy can reduce painful symptoms as well as reduce the damage MS does to personal and family life. Sometimes medication and psychotherapy are combined, and, if you are lucky, you will find a physician/therapist team who have worked together before.
Family, couples and group therapies can also be helpful. MS is an illness that effects the whole social system. Acknowledging and discussing the impact on marriages and family life can go a long way to prevent or repair depressing rifts in relationships.
Depression is rarely easy, often devastating, and it should always be taken seriously. No one who is depressed should be deprived of treatment. Yet, there are barriers.
The greatest barrier to getting treatment is the stigma those of us with MS experience toward our own depressions. Grouchy and irritable people with MS can deny our feelings or minimize our distress. We might feel personally attacked if someone suggests counseling. Some sub-cultures consider visiting a psychologist a sign of weakness, even when they might not blink twice about a golf coach, a personal trainer or getting advice from an accountant or a lawyer. When faced with extraordinary personal difficulties, there is no shame in seeing a professional about how to manage your emotions.
Financial barriers also exist. We often already have significant financial burdens. Even though insurance covers psychotherapy, the cost of mental health co-pays can add up. Some of us without insurance coverage have to pay for treatment out of our family budget. Finding out what these expenses will be can present a problem in a changing health care environment. Sometimes the MS Society can help with these things. Most chapters help with finding therapists, and some chapters subsidize treatment costs. Others offer therapeutic support from MS Society staff. Calling 1 800 FIGHT MS connects people with MS to the local MS society, where information about what is available can be found. Many psychologists, or other counselors, help patients find their benefits. They may also reduce their fees for financial hardship, or help find reduced-fee services.
Sometimes it’s hard to find a mental health professional who understands MS. MS Society recommendations may help with this. But, don’t be afraid to ask a therapist about their experience with MS.
Learning to understand what your depressed or depression -like symptoms mean and getting help to manage them is always worthwhile. While any single treatment may not be effective, persistence in finding the right combination of psychotherapy and medications is almost always effective. Treatment may not get rid of depressed symptoms completely, but it will at least reduce symptoms and might prevent or reduce damage to the relationships you have with people you love.
by J. Lamar Freed, Psy.D.
Many discussions about Multiple Sclerosis (MS) include questions and comments about depression. Anxiety may be mentioned in that discussion, not seen as a separate entity in its own right.
Yet anxiety is something that people with MS often experience, either in the normal course of events or due to specific problems related or unrelated to the disease.
Anxiety is “distress or uneasiness of mind caused by fear of danger or misfortune.” It is “a state of apprehension and psychic tension occurring in some forms of mental disorder” (Random House Webster’s Dictionary).
Anxiety shows itself in many ways. It can include muscle tension, trembling, stomach upset (or butterflies), nervous tics, and many others. Anxiety often occurs because someone expects something bad to happen. Small wonder that 90% of people with MS get anxiety.
Anxiety touches us at many levels. The anxious bride. The speeder stopped by a policeman. Getting anxious when expecting an argument, or before speaking in public. The expectation of a bill or more than one bill. A test or an important meeting can cause anxiety. Like everyone else, people with MS have all of these anxieties.
But people with MS also have other causes of anxiety, some of which are unique to being ill and specifically to being ill with MS.
People with any illness often have anxieties and worries that haunt them. Fears about pain or debilitation are shared by many people with MS. But worries about a fatal illness or a contagious one is not something people with MS have, not if they have gotten good information.
MS offers several unique reasons to cause anxiety. For many, it is a recurring disease. It goes into remission and returns in relapse. For others, it is a progressive disease, with steadily reducing abilities. All versions of the illness are hard to predict. That means on any day, at any moment, on any morning, the disease can raise its ugly head. A new lesion can develop at random in the brain and new symptoms can develop. This can often cause significant anxiety in people with the disease. What will tomorrow hold? Will I be able to work or shop or pick up my child? Some people find that their particular version of MS follows a certain pattern, but many people with MS do not have this experience.
A second substantial cause for anxiety with MS is the progressive nature of its course and worries about prognosis. This was the first big question I brought to discussions about MS. What are my chances for getting a “good” version of the disease, versus a version that would put me in a wheelchair in five or even one or two years? What percentage of people with MS can work for the rest of their lives? How long will I work? These are scary questions.
Another scary time is when a new symptom appears. This can cause fear or panic. What does it mean? How long will it last? Will it get worse? Will it be permanent? Will I be able to keep working? Is this the symptom that signals a drastic worsening of this disease? Being diagnosed with MS means having to manage these fears.
Sometimes a lengthy diagnostic process can accompanu early symptoms. For many, a clear diagnosis of MS takes many years. For others, the diagnosis is accompanied by many unpleasant, intrusive, and potentially painful medical tests. Each of these has its accompanying anxieties.
For these and many other reasons, the experience of anxiety is understandable with a diagnosis of MS.
When a negative or dangerous event is anticipated, the body can respond in very primitive ways. In the primordial world of ancient history, anxiety resulted when a saber-toothed tiger jumped out from behind a rock, or when a hunter approached his prey. The anticipation of danger causes the body to do a number of helpful things. The body sends adrenaline to the muscles to optimize their functioning. It shuts down nonessential functions, like digestion, so that all energy can be funneled to essential systems. It increases heart rate and breathing, to provide a maximum of oxygen to the muscles. It automatically charges up the fight and flight systems in order to increase chances for survival.
This is the system implicated in anxiety. When the system is fully engaged, panic results. Partial engagement of the system can cause other, less extreme, responses. But it is important to remember that anxiety is not always a bad thing. It saved many of our ancestors and it can be a useful signal for us today.
I went out in the heat to garden for a few minutes the other day. I was anxious about doing so. I had a work day scheduled the following day and the kind of MS fatigue I have carries over into the next day when I overdo. While I was outside, my wife was digging a hole for a tree we had ordered. I got a hoe and began to help her. I was hot, but it was initially pleasant. Then I stumbled slightly and my anxiety increased. I made a comment to my wife that I probably shouldn’t be out in the heat. She told me to go in. I kept working. But I started thinking “you shouldn’t be doing this.” “It’s to much for you.” And my anxiety grew. Finally when my knees started notably wobbling after about 20 minutes, I finally listened to my anxiety and went into the air conditioning.
Anxiety is often a signal to tells us something is amiss. When we know what the signal means and listen to it, it serves an important function. If we are anxious about a meeting, we will prepare more for it, or we will increase attention and concentration to pay attention to nuances we could have missed in a relaxed state.
If we are anxious about symptoms, there are some things that help minimize or manage them safely. Developing a plan to manage a particular version of MS can be very helpful in controlling anxiety.
Sometimes anxiety gets out of control. Someone with a fear of a relapse can live in constant dread of the next returning symptoms. Anxiety can be paralyzing. But chronic anxiety has costs of its own. Staying too long in a state of anxiety can cause serious digestive problems. Muscle aches and other discomfort can be worsened. Anxiety can cause headaches and other symptoms. Anxiety can make us irritable and interfere with our ability to relate comfortably to people who are important to us. When anxiety reaches such proportions, it is time to do something about it.
There are simple ways to manage anxiety that most people with MS should be able to do. Getting the most information about the disease and understanding it as best you can is a good start to keep anxiety reasonable and within bounds. Utilizing the social support available to you by talking with people close to you should also help. When this is not enough, supplementing natural support systems with more formal opportunities for emotional support can also be helpful. People can find an MS support group, a psychotherapist, or other more general support groups. Finding a team of trusted professionals to monitor and provide care for the disease and its symptoms can also go a long way in reducing painful fear and anxiety.
Anxiety is an important feeling. We should pay attention to it. But it can get out of hand and cause substantial unpleasantness. When this happens, a mental health professional should be consulted. Treatments for anxiety range from supportive and cognitive therapy, to systematic desensitization, to flooding and can include a variety of very effective medications. Each treatment is personalized so that the particular kind of anxiety is targeted.
Anxiety is often caused by MS and its symptoms. To a certain degree this is unavoidable and even appropriate. MS is a real, dangerous, and often debilitating disease that offers much to fear. But the fears, worries, and anxieties that can come as a result of MS also can cause damage. Much can be done to manage these anxieties. Leaving them untreated or ignoring them is a mistake that can have both immediate and long term consequences.