Cover Story: Making the Most of Our Relationships
Helping ourselves and those around us to cope with MS
By Susan Courtney
With contributions from:
Jack Burks, MD
Kimberly Castelo, MS, LMFTA, CIIP
Miriam Franco, PsyD, MSCS
Kathleen A. Taylor, PhD
After the Diagnosis
Relationships and Initial Reactions
From the time we are born, we depend upon relationships to survive and flourish. Unfortunately, circumstances are not always ideal, and different things can complicate relationships. We all know that most relationships are not without their problems, and when a chronic condition such as MS enters the picture, it can make an impact on our interactions with one another. How we choose to address the issues that may arise and how we communicate with one another can make a tremendous difference.
Whom to tell, what to tell, and possible reactions to expect will all differ by how close you are to the individual and whether the person is an adult or a child. Once those close to you are aware of your MS and the symptoms you may be experiencing, keeping your lines of communication open – and practicing good speaking and listening skills – will help to ensure that your relationships remain positive.
Miriam Franco, PsyD, MSCS, is a psychotherapist and psychoanalyst who specializes in working with individuals coping with chronic illness. She has been an active member of MSAA’s Healthcare Advisory Council for many years and has contributed to several articles appearing in The Motivator.
Dr. Franco explains, “MS varies with individuals and families. A broad range of symptoms is associated with MS and individuals differ considerably regarding how this disease affects them initially and over the course of time. No two people or families react exactly the same way in responding to an MS diagnosis or in coping with this disease. Everyone, however, remembers the day he or she was diagnosed and what it felt like to receive the diagnosis.
“First reactions can range from shock, disbelief, and anger, to fear and denial. These are all adaptive and predictable responses that you may experience initially. If you had to wait months or years for a definitive diagnosis after living with puzzling, unexplained symptoms, or if you doubted your perceptions, the diagnosis can bring some relief. This is especially true if you’ve been told ‘this is all in your head.’
“Most MS doctors are aware that individuals need time to grasp what is happening, to learn and understand what may be involved, and to find out about what treatment options are available. Time is needed to not only build a treatment plan, but to also develop trust and a supportive relationship with healthcare practitioners.”
Your family will need time as well to adjust to the diagnosis and people react to a diagnosis in different ways. Some want to learn everything they can about MS as soon as possible. Education can come in many forms, from informative websites, publications, and videos, to support groups, educational programs, and one-on-one discussions with your healthcare professionals. Be sure that you are keeping the amount of information at a reasonable level and are consulting reliable resources, such as MSAA or other major MS organizations.
While some want to get information, others may become upset and “turn off” at the idea of learning more about the disease. They know that getting MS is not fair, that it is not anyone’s fault, but they may still ask, “Why me?” Another common reaction is great concern and over-protectiveness. A spouse or parents (including a parent of an adult with MS) can often feel this way, and in their worry for your safety and health, may infringe upon your independence. Learning about the disease and having open communication about your symptoms, along with the precautions you are taking, can greatly help to reduce the anxiety that your spouse, parents, or others close to you may be experiencing.
Dr. Franco continues, “Grief is a reaction most people don’t expect, probably because it is frequently associated with the death of a loved one. Grief, however, is a natural and often necessary reaction to any significant change that threatens your sense of self or areas of former functioning. You may find yourself grieving over your initial diagnosis or any time you experience an exacerbation of your symptoms, especially during relapses.
“Depressive symptoms are common with MS because the disease itself may trigger these. Depression is also highly treatable and the best strategy is to treat it early before suffering too long. Anxiety also seems to come along with MS, largely because it is such an unpredictable condition, making it difficult to plan and requiring that you become more flexible and tolerant of the disease.
“Mental health professionals with experience in working with MS can be very helpful here and can help you discern between what is MS and what is not. Treating your depressive symptoms can also help reduce fatigue and stress, which can exacerbate your MS symptoms. Understanding your symptoms and proactively treating them can help you to minimize their impact on your relationships with others.”
Deciding Whom to Tell
According to Dr. Franco, “How you begin to cope with MS and whom you decide to tell are dependent on many variables, such as age, life experiences, presence of social supports, personality-coping style, access to good MS care and resources, and the type of symptoms you are experiencing. For instance, if you are a young adult in college and are not struggling with gait difficulties that others can see, you may opt to only let your academic advisor know of your condition, but not opt to tell most of your peers. You may prefer to ‘blend in with the crowd’ as long as possible to appear that you do not have this condition. You may feel that there is a stigma associated with having a condition and fear you might be treated differently once you disclose your MS.
“You may choose not to tell others about your MS, as you may fear that people won’t understand, will exclude you in some way, or will treat you as less capable. You may also not want to be reminded of your condition when you are not experiencing major symptoms as, after all, it takes time to really wrap one’s self around having MS. And it takes time to become a person with MS versus an MS patient.
“In the MS community, the ‘newly diagnosed’ are those who have been coping with the disease for at least the first two years, which implies that the diagnosis and what it may entail takes time to know and to set in. If you are in a committed relationship, it’s common to experience private fears that your partner may leave you. If you have children, you may fear your disease will interfere with your parenting or you may become a burden to others.
“It’s important to keep in mind that if any of your initial reactions to having MS become unmanageable or too uncomfortable, you’ll find that much support is available. Major MS organizations such as MSAA provide resources for support, including hotlines, educational videos and publications, and referrals to psychologists and social workers who are skilled in helping people cope with the emotional and stressful effects of having MS. Support groups can also be very helpful.”
Daily Life and Family Relationships
The Impact of Symptoms
Specific MS symptoms can easily impact relationships, roles, and family routines. Such symptoms as fatigue, depression, cognitive issues, emotional vulnerability, and pseudobulbar affect (PBA, a condition with sudden, involuntary episodes of crying or laughing) may be particularly challenging. These types of symptoms can create confusion and upset within the family, as the individual with MS may have difficulty performing his or her normal activities or may act inappropriately.
If you are experiencing symptoms of significant fatigue or depression, activities such as housework, running errands, socializing, and even interacting with your children, can become difficult if not impossible at times. Family members need to understand that you are not being lazy, but are rather experiencing some of the most common and debilitating symptoms of MS. Openly speaking with your family members and getting professional help to treat those symptoms are vital.
With the other symptoms mentioned, including cognitive issues, emotional vulnerability, and pseudobulbar affect (PBA), you may be confused or overly emotional at various times. Similarly, family members need to understand that you do not have control over these symptoms and emotional outbursts do not represent your true feelings. In these types of instances, your spouse or other family member may need to assist you in getting help for these difficult issues. All of these symptoms have management strategies to reduce the severity of the symptom, often using medication in combination with other types of therapies.
Kathleen A. Taylor, PhD is a Professor in the Psychology Department and Chair of the Women and Gender Studies Department at the Sierra College in Rocklin, California. She is also a new member of MSAA’s Healthcare Advisory Council.
Dr. Taylor agrees that getting help to treat your symptoms is critical to your health and to your relationships. However, particularly with invisible symptoms – including pain – you need to be your own advocate to make sure you are getting the help that you need.
According to Dr. Taylor, “Managing pain can be difficult and research suggests that, compared to men, women’s reports of pain are more likely to be dismissed and their pain relief protocols less likely to be as aggressive. Although no data directly suggest that women with multiple sclerosis are less likely to be treated for pain than men, it is important that your doctor understands how much pain is being experienced and what interventions work best.”
Because MS has so many symptoms that may not be seen visually by another person, people tend to think that you don’t look sick, even when experiencing difficult symptoms. Often someone with MS may look fine, but he or she is unable to participate in everyday activities. Those around you may not understand or believe how ill you may be feeling and some may even feel resentful or angry that you are not doing your fair share of work around the house or on the job.
Dr. Taylor continues, “This can be particularly difficult for women due to gender stereotypes about women as non-rational or prone to hysteria. The very nature of MS in terms of ambiguity of early symptoms may play into these gender-biased notions about women’s “inherent” emotionality, leading to the assumption that they are unreliable reporters of their own experience. Combine this with the tendency for women to emotionally take care of their loved ones, and this can become a significant issue. It is essential to be frank about your symptoms and clearly define limitations. This can be difficult, but also expressing when one is having a ‘good day’ versus bad helps people understand that not all MS days are experienced in the same way.”
Particularly when not having a good day, or when experiencing a flare-up of symptoms, having plans in place for redistributing household duties is always a good idea. Knowing that your spouse and older children can pitch in with making a meal, shopping, laundry, and other responsibilities can help to provide some peace of mind. While care must be taken not to ask too much of your children, learning to help someone in need teaches children the importance of having empathy for others and looking beyond their own needs and wants.
Dr. Taylor points out, “Individuals can experience issues around trying to pass things off as ‘life as normal,’ while putting out considerable effort to cover the appearance of illness. Often this can be seen in small ways, such as doing more housework and perhaps even overcompensating in that area – now the house needs to be even cleaner or tidier than it ever was in the past. Although achievement in and of itself can be rewarding, sometimes this new goal or standard creates unnecessary stress and self-criticism if one fails. It can also use precious physical energy that will be in short supply for other pursuits.”
Talking to Children about MS
According to Dr. Taylor, “Exactly what to tell a child about an MS diagnosis clearly depends upon the child’s age and maturity level. There is the issue of how much information and how to tell that information so the child still feels that the parental attachment is secure and that although things might be different, parental commitment and love continues.
“When a parent chooses to not reveal that they are ill, sometimes the children intuit that something is wrong but no one is talking about it. For example, Dad looks angry whenever he drops something when it never used to be a big deal. Who is Dad mad at? For some children, this can be frightening as they fill in the ambiguity with their own invention of what could be wrong.”
In the book MS and Your Feelings (Hunter House Inc., 2007), written by Allison Shadday, LCSW (a counselor who also has MS), the topic of talking to your children about MS is addressed. Just as Dr. Taylor notes, Ms. Shadday advises that you keep your explanation simple and age-appropriate. She notes that to a younger child you might say, “Mommy gets sick sometimes and needs to lie down and rest.” She emphasizes the importance of explaining that you will not die from this illness, but that you will have days where you feel better than on other days. Children need to be reassured that MS isn’t their fault, isn’t contagious, and they will not catch it from you. Ms. Shadday also instructs that you stay calm and confident while talking to your children and encourage them to ask questions.
Creating a Positive Relationship with a Child with MS
Just as MS affects adults differently, the same is true for children. Many children with MS may appear to be fine, but in reality, they may be experiencing the same types of invisible symptoms as adults do, including fatigue, cognitive issues, and depression. Others may have symptoms that are more visually evident and affect functions such as mobility, strength, and coordination.
In the book, The Personal Care Attendant Guide (Demos Medical Publishing, 2007), written by Katie Rodriguez Banister, several tips are listed for caring for and interacting with a child with a disability and how to keep the relationship positive. To follow is an overview of the main points given in this book.
Children first and foremost need to be loved. They have feelings that always need to be considered. If the help of an aide is required, he or she should know from the start what the child is capable of doing and what things he or she needs assistance with to complete. If providing physical care for a child, being sensitive and gentle is vital. Be respectful of your child’s privacy; don’t discuss the diagnosis or special needs with everyone. If help is needed with dressing and bathroom details, be sure that doors are closed and privacy is always respected.
All children need to have fun, so make time to play on a regular basis. For a child with MS, giving him or her some space and not fussing over the child all of the time is important. Avoid yelling when a child makes a mistake, and regardless of the level of their ability, always show respect to children, which will also help them to learn to give respect back to those around them.
Cognitive ability and degree of physical disability frequently do not correlate. This is particularly true with MS, so while interacting with a child with MS, always communicate well by thoughtfully talking and listening; never talk down to a child (or anyone) with a disability. Keep in mind that children are still learning and have many experiences to go through; don’t forget that their concerns, emotions, and thought processes are different from those of an adult. You also need to help prepare your child for a successful life, which includes working with him or her to set personal and academic goals.
Encourage children to be independent and learn to do things on their own. Particularly for children who are disabled, their parents often want to do too much for them. Learning to do things on their own, such as communicating independently and speaking for themselves, instructing others on how to care for them, and learning positive ways to deal with negative feelings, can all work together to empower them and develop self-esteem.
With or without disabilities, all teens experience the same challenges with hormones and with identity issues. They are continually trying to find themselves. The key is to be patient and try to help them find healthy ways to overcome any confusion, anger, or other emotions they may be feeling. Talking openly about the changes they are experiencing and their emotions can be very helpful, but if they are still struggling, seeing a counselor or therapist is often recommended.
When More Than One Family Member is Diagnosed
Dr. Taylor provides her unique perspective, “Although it is not common, in biological families more than one person may be diagnosed with multiple sclerosis. When this occurs, a range of emotions can be experienced. The symptoms and degree that MS affects each individual may vary, and this may carry with it subtle feelings of guilt about being less affected or conversely, disappointment about being more affected than the other family member.
“Expectations by non-affected family members may change as they begin to wonder if indeed they are also likely to be diagnosed. It is important to remember that there is no genetic test to assure one if he or she will or will not get MS, and the likelihood of more family members becoming ill is not high.
“From my personal vantage point as someone who received a diagnosis of MS 14 years later than my fraternal twin sister’s diagnosis, it was important to remember that although we can talk about similarities of our symptoms, each of us are having unique experiences. We find that we can both be supportive for one another, but at the same time, there can also be a tendency to not want to ‘burden’ the other, since she is already dealing with her own version of MS.”
Self-Esteem, Self-Efficacy, and Self-Image
Self-esteem, self-efficacy, and self-image are all communicated either verbally or nonverbally in our relationships. These may be seen in how you carry yourself, whether you refer to yourself in a positive or negative way, and the things you find important about yourself and your relationships.
Dr. Taylor explains, “Self-esteem is the emotional response to self-efficacy. For anyone not familiar with this term, self-efficacy is the ability we believe we have to meet challenges and achieve goals. We have multiple roles we play in life (such as parent, daughter, employee, singer, athlete, etc.) and self-efficacy will relate to any particular role.
“One of the greatest difficulties is considering that you only have one role in life that matters. Hence, when you lose the ability to meet all the actions and goals important to you within that one role, your self-esteem suffers. This lowering of your self-esteem can improve as you adapt to being in that role differently by adjusting personal expectations and creating achievable goals.
“Additionally, you need to keep in mind that you play multiple roles in life, each with their particular goals and challenges. Focusing on expanding the complexity of the role in which you view yourself can be particularly helpful, as there are countless ways to make contributions in life.”
Multiple Sclerosis: The Questions You Have, The Answers You Need (Demos Health, 2012), written by Rosalind C. Kalb, PhD, covers a wealth of MS topics. In her book, Dr. Kalb explains that your self-image has been built up slowly over your lifetime and is made up of many components, including personality, skills, and life experiences. When MS interferes with your ability to do something that is important to you, or forces you to do something differently, you will find that these types of changes will cause you to mourn over the loss of the “old you.” However, this will allow you to become more comfortable with the “new you,” as your self-image shifts to incorporate these changes.
Dr. Kalb points out, “As you confront the challenges of everyday life with MS and learn alternative ways to do things, you will begin to identify strengths and talents you never knew you had.” She suggests that as you give up an activity, experiment with others that may turn out to be equally satisfying. Most importantly, find an aspect of yourself that MS is unable to touch, such as your sense of humor, religious beliefs, or love of music. This “MS-free zone” will help you to retain a sense of who you are, and can also be an important source of emotional energy. When drained or overwhelmed by the challenges of everyday life, you can refuel by tapping into the things you enjoy through your “MS-free zone.”
Relationships at Work
In The Everything Health Guide to Multiple Sclerosis (Adams Media, 2009), written by Margot Russell with Allen C. Bowling, MD, PhD, as the title states, virtually every major topic of importance to an individual with MS is addressed. To follow is an overview of some of the information given on employment and MS.
After diagnosis, many may question if they will be able to stay at their job – and some might immediately assume that they will need to discontinue their career. However, no one knows the course his or her MS will take, and particularly with today’s treatment options, many are experiencing fewer and less-severe relapses and are able to stay at their job. Also, if and when symptoms interfere with one’s ability to perform a job, accommodations can frequently be made. These may include easy changes such as getting a closer parking spot or modifying one’s office space, or more significant modifications, such as changing one’s job duties and schedule. Various types of assistive technology are also available. However, accommodations must be reasonable, and not cause undue hardship to your employer.
The big question that individuals with MS are faced with is whether or not to divulge that they have MS to their employer and coworkers. They may feel that doing so will impact their relationships at the office. Fears may be that coworkers will treat them differently, that they may miss out on promotions, or that they may even lose their job.
The Americans with Disabilities Act (ADA) has been protecting individuals with disabilities from discrimination since 1990, and this has served to prevent people from wrongfully losing their job, being demoted, or taking a cut in pay. This law, which applies to employers of 15 or more people, also specifies that reasonable accommodation be made to modify one’s position, schedule, or work environment, to enable a person with a disability to continue his or her employment. Please note that state or local laws may apply to smaller companies, helping to prevent discrimination and allow for reasonable accommodations in those circumstances.
Under the ADA, people do not need to divulge their specific diagnosis. However, if you need to request an accommodation, you need to establish that you have a disability. A disability is an impairment that affects one or more major life functions such as sight, hearing, mobility, etc. If you request an accommodation, the employer must determine whether or not you have a disability that would affect your ability to perform your job and requires some type of modification.
Sometimes medical documentation is needed for your employer if your disability is not obvious. While you do not need to divulge a specific diagnosis, you do need to give some type of reason for your disability, and saying that you have a “neurological condition” may be adequate – and this can be stated in your medical documentation from your doctor as well, rather than specifically saying that you have MS, should you prefer to keep your diagnosis private.
Individuals may feel the need to divulge that they have MS, or some type of disability, when their symptoms may be easily observed and can no longer be hidden – such as when experiencing changes in mobility. They may also want to tell their employer when having to take extra days off from work and are having trouble keeping up with their duties. Another reason may be to request modifications to their work environment, job description, or schedule. Examples of schedule changes may include such options as flexible hours, job-sharing, changing from fulltime to part-time hours, and working from home.
If you do tell your employer about your diagnosis, you may feel some relief as you no longer need to hide symptoms that you are experiencing. Keeping your symptoms hidden from others can be very stressful. Additionally, if you choose to tell your coworkers, they may become more understanding of your needs as various challenges arise. However, you need to be prepared for the possibility that some people may have misperceptions about the disease and not be as open-minded.
When telling your employer that you have MS – or something less specific, such as a “neurological disorder” – planning what you want to say in advance is important. Ideally, you should be familiar with the laws that protect you from discrimination, and the size of your company can affect which laws apply. By doing so, you will know what types of modifications to your job and work environment may be possible. You should think about your limitations and what aspects about your job are or may become difficult for you. Some people may consult a job or career coach to learn about their options.
Approach your conversation with your employer in a business-like manner, trying not to become overly emotional or give too much personal information. When you talk about the symptoms that you want to disclose, explain how they may affect you and what types of reasonable accommodations will help you in your job. Be prepared to give solutions for any challenges you may anticipate, so your employer will know that you have strategies in place to continue at your present level of work.
If you decide to disclose that you have MS to your employer and possibly to your coworkers as well, giving details about the disease is important. Be sure to clearly state that it is not contagious, so no one would have that worry. You may want to describe some of the symptoms you experience, and if you have a relapsing form of MS, explaining how symptoms will flare up and then remit after a period of time will help those around you understand why some days are more difficult than others. Talking about any invisible symptoms you may experience, such as fatigue or vertigo, will let others know that while you may appear to be fine, you may be challenged to complete certain tasks. Doing so may also help reduce someone’s suspicions that you are taking advantage of your disability.
In regard to interviewing for a new job, potential employers are not allowed to ask whether or not you have a disability. However, they may ask if you have any concerns with your ability to be proficient at the job. If a medical exam is required, it must be one that is required for all individuals applying for similar positions and must also be related to the work at that company.
The Importance of Communication in Your Relationships
Kimberly Castelo, MS, LMFTA, CIIP is a Licensed Marriage and Family Therapist Associate and Certified Integrated Intimacy Professional in Seattle, Washington. She is also an inspiring speaker at MSAA’s educational programs.
Ms. Castelo explains, “It is hard to communicate. We do it all the time, but truly it is a hard task. Everyone has feelings, we hear each other differently, and we bring our fears, joy, and histories into our conversation. When talking with others and the talk is getting tense, it’s okay to say that the conversation is getting heated… emotional… stressful… and can we take a break and reconvene in 20 minutes? Taking that break can help people self-sooth and regroup for another try at communication.
“Sometimes you may have a need to improve communication at home, work, school, or with friends. A good strategy is to identify what you would like to accomplish from a conversation, and if you want to, write your thoughts on paper. Consider how you can communicate while being self-reflective and not pointing fingers or blaming. Being self-reflective and non-blaming opens dialogue that is helpful.
“Being honest about MS can be scary; you wonder how people are going to respond. You may ask yourself, ‘How am I going to put my diagnosis into words?’ It’s okay to be nervous. You can also say, ‘This is a really hard topic to talk about, but what I need is…’ and then state what you are in need of or hoping for from your talk.
“Clearly defining what you are expecting or needing from people can help to open the lines of communication. Always trying to be overt with communication can strengthen bonds between people. Try to avoid assumptions or ‘mind-reading.’ You can be curious… for example, ‘I am sensing that you are feeling a certain way’ (note what emotions you think another may be feeling); then ask if you are correctly picking up how the other person is feeling. Asking a person to respond to your perception – and allowing the individual to tell you if you are right or wrong – will help to enhance communication.
“Listening is such a powerful tool in communication. Many times we overlook the power of hearing each others’ stories. Listening involves our whole body and how we engage someone else. Are we making eye contact, does our body say we are engaged and interested, are we talking less than the other person? Often times slowing down a conversation and saying ‘I am hearing you say… did I get that right?’
Slowing down a conversation to make sure you are taking in all of the details helps people feel heard and loved. When someone truly listens to us, it can be healing to our mind and body… releasing tension and providing the realization that we are not alone.”
Communicating with Children
Ms. Castelo notes, “Communicating with children can be upsetting because parents worry if their children can handle difficult topics. Being open with your children in an age-appropriate manner is always helpful. Talking to young children about a parent having MS needs to be addressed at their level, but should not be hidden. What this reflects is how the family can join together and overcome whatever life brings their way.
“Look for books for children that talk about a parent having MS or a parent being sick. MSAA offers two books for parents talking to younger children about MS, titled Mommy’s Story and Daddy’s Story. These types of books can help begin the dialogue.
“For older children, sharing fears and talking about some of the issues of MS – while trying not to overwhelm them – is always helpful. Naming our fears to our loved ones and being overt about what we are afraid of can help reduce the fear and take away the heaviness from these types of difficult topics.”
Communicating with Parents
According to Ms. Castelo, “For an adult with MS, talking with your own parents can have its own challenges. Similar to talking to older children, you’ll find that being honest with fears, hopes, and dreams is always important. Using ‘I’ statements that are self-reflective can help communication.
“Try to avoid defensiveness, blame, or guilt. Also avoid using words such as ‘always’ and ‘never,’ as these are rarely 100-percent accurate and tend to close a conversation rather than open it. Being self-reflective and talking about your personal feelings tends to open a deeper and more meaningful conversation.”
In her book, When the Diagnosis is Multiple Sclerosis (The Johns Hopkins University Press, 2009), author Kym Orsetti Furney, MD talks about the challenges she felt when having to tell her parents that she was diagnosed with MS. Dr. Furney notes that while she is very close with her parents emotionally, they did not live nearby and were not aware of her recent symptoms. She didn’t want to create new issues for them until she knew what was wrong.
Once her diagnosis was confirmed, Dr. Furney took a day or two before telling her parents. She explains, “While my husband had seen all the tears, my mom heard a calm daughter reporting the facts like the physician I was trained to be… I never shed a tear on the phone and neither did my mother. As silly as it may have been, I felt that I had to be strong for her. I am sure she felt the same for me. Yet, I felt great relief in telling both my mother and my father and in hearing their words of love and encouragement.”
Communicating with Your Significant Other
Ms. Castelo points out, “With regard to communication with a spouse or significant other, talking openly is very important for romantic relationships. Allowing fears and joys to be heard enables each other to draw closer and create a deeper intimacy. To be touched, to feel loved, to be heard, and to feel safe with a significant other, all helps our moods and helps us face difficult situations. Drawing close to a person who makes us feel safe can reduce anxiety and even reduce physical pain.”
In the book MS and Your Feelings (noted earlier), a great deal of helpful information is provided on improving your communication skills with your spouse or partner. Author Allison Shadday, LCSW starts by explaining that lack of communication is one of the biggest problems that can occur in a relationship. Additionally, when a chronic illness such as MS comes along, good communication becomes an even bigger challenge.
Ms. Shadday notes that the most frequent cause of misunderstanding among her clients is a result of what she refers to as “The Mind-Reading Trap.” This is when someone with an illness has the unrealistic expectation that a partner should automatically know his or her wants, needs, or emotions. However, this is an unrealistic expectation that leads to disappointment and hurt feelings.
She explains, “Living with our illness day-in and day-out, we become intimately aware of how we’re feeling moment-to-moment, so shouldn’t our loved one be aware as well? We desperately want them to be able to read our moods and physical abilities because so often we feel alone in our struggle.”
Especially with an illness such as MS, where symptoms such as fatigue, pain, and vertigo are invisible to others, expecting your partner to know what you’re feeling and how much it is affecting you at that time is not reasonable. For example, you might be looking for help and feeling upset because your partner isn’t pitching in, while your partner might be mis-interpreting how you feel, thinking that you are angry and want to be left alone. Whether you’re looking to be comforted, to have help with dinner or housework, in need of some rest, or wanting to have some space, you need to openly communicate these types of feelings to your partner so he or she knows what to do.
Learning to accept help from others is another issue that can interfere with relationships. Often people with an illness or disability do not want to burden those around them, so they may avoid asking for assistance. However, in most instances, people enjoy helping others. Doing so allows people to feel needed and appreciated, along with building their self-esteem.
Ms. Shadday points out that men and women often communicate differently and are looking for different results when a problem arises. She explains that women with a problem want to be heard, and feel a sense of relief and comfort simply by telling their feelings to another. They are looking for understanding and for someone to say they are not alone. Men on the other hand want to fix and protect, so they will offer a solution without recognizing the woman’s feelings or providing any comfort. As a result, a woman may feel hurt and as if her emotions and concerns are unimportant. Things only get worse as men misinterpret how women react to their advice, becoming confused and frustrated that a woman isn’t happy to get his help.
In instances where the wife has MS, a husband may feel helpless when trying to fix the issues that his wife is experiencing with the disease. And she may be hurt that he isn’t providing enough comfort and understanding. These types of miscommunication can be resolved by learning to listen to one another and to be more supportive. Specifically asking how each of you is feeling and how you can help one another is a good way to avoid these types of problems.
Ms. Castelo inquires, “Why is asking for help so hard to do? Is it because we are told never to show weakness? Is it because we are having a hard time accepting help, and if so, why? Take time to reevaluate what is stopping you from asking for help. Find that asking for help – even from people who you do not know well – is a strength! It is also a way to allow yourself to feel loved and cared for.
“Withdrawing is very common when we are feeling overwhelmed. However, reaching out to others helps with our mood and outlook on life. While our tendency might be to withdraw, the goal would be to fight that urge and try something new. You’ll find that staying involved with others can add more happiness to your life. Try doing the kinds of things that you used to enjoy, such as going to a movie, or getting together with an old friend.
“Support groups are great! They help us feel like we are not alone. We can also learn about new ways of coping with MS that we hadn’t thought of before. In addition, we can meet new friends who we can connect with and expand our network of people with whom we can engage and share our thoughts.
“Look for a group where your voice can be heard and where you can learn from the others. Hopefully being heard and learning new ideas is what you can expect from every group. Take some time to decide if a group is right for you… because as with all relationships, getting to know the other members takes time. Give some time to find the rhythm of the group and how you might add to that rhythm.”
In Multiple Sclerosis: The Questions You Have, The Answers You Need, Dr. Kalb talks about the variety of support groups that are available. She notes that groups may be large, with 20 to 200 people, and tend to be educational and feature invited speakers. Groups may be small, with a consistent membership of 8 to 10 people who meet regularly to share problems and support.
Support groups may be led by professionals, peers, or have no leader. Groups range from those aimed at people who are newly diagnosed, to those coping with the disease for several years, to those who are more significantly disabled. Groups may be formed for couples, spouses, or children of someone with MS. Employment groups, to discuss job-related topics, may be available, as well as singles groups for men and women to meet others who share the same challenges.
To find support groups in your area, you may call the National MS Society at (800) 344-4867 or visit the MS Foundation’s website at msfocus.org/support-groups.aspx. Dr. Kalb notes the importance of finding the group that is the most suitable for you. She suggests that if one does not seem to meet your needs, try another. If you try several but still haven’t found the right fit, you can start a group of your own! The two organizations mentioned above can help you get started.
An Added Note from Jack Burks, MD
MSAA’s Chief Medical Officer Dr. Jack Burks has been helping individuals with MS for more than 40 years. He has seen many people experience conflicts in their relationships.
According to Dr. Burks, “You should try to plan time in a private, quiet place for discussions with family and friends. Before starting a difficult conversation, to avoid offending anyone, think of a polite phrase to use in case you need to end the conversation and reconvene later. You might say, ‘I hope you don’t mind, but I need to take a break and collect my thoughts.’
“Taking time away from a conversation can be very helpful when you’ve reached an impasse. Sometimes only a short time is needed for everyone to recollect their thoughts and plan a more supportive approach.
“After restarting the conversation, make sure both parties feel understood by acknowledging the other person’s perspective with respect. Listen to one another with empathy, and when appropriate, say things such as, ‘I agree’ and nod your head. When done, restating what has been discussed can reinforce areas that you agree upon and establish a plan. Thanking the other person for understanding, while showing positive signs – such as a smile and hug – will convey the love and support that you have for one another.”