In this diagnostic area of CHRONIC ILLNESS, I provide guidance, support and empathy around the feelings and reactions in response to:
Being diagnosed,
Living with such a diagnosis,
Issues related to relationship and workplace concerns and stressors,
Particular emphasis on helping those diagnosed live with a disease that is largely characterized by its uncertainty and unpredictability.
Emphasizing MINDFULNESS around one's disease and using self-awareness about how one's MS affects an individual can actually empower that person to be more involved in making proactive decisions on his/her own behalf.
Honored with designation of MS Partner in Care through the National MS Society. Partners include health care professionals in the areas of neurology, mental health and rehabilitation, as well as sites that provide multi-disciplinary health care. Partners demonstrate knowledge, expertise and experience in MS care, and have a special interest in treating people living with multiple sclerosis.
Previously a Program Consultant for Can Do Multiple Sclerosis, an organization that runs 1-5 day programs for MS Patients and their respective Support Partners with the overall mission to EMPOWER all participants. Here are some MS-related questions posed by interested parties followed by my subsequent responses:
“I feel very much alone in my MS world. I believe my husband wants to help and he does with "priorities," e.g. shopping, helping around the house, and walking the dog. I need him to treat me like his precious wife and remember the things that make me happy. I should be his priority; instead, I always feel like a burden. How do I get him to recognize that chores should not be the only focus of the day?
Psychologist Response: Gayle R. Lewis, Ph.D., ABPP, MSCS, Can Do MS Programs Consultant
It’s so difficult to be given a diagnosis that erodes your sense of control over your body and life, and even more so when you feel that the lens through which your partner sees you has changed so drastically- to be made to feel “special” because he takes on daily chores that perhaps you no longer can do yourself vs. feeling “precious” because of the love and connection you have with and for each other. Hard at this might be, the only way for him to understand this distinction – and to realize what you perceive to be his “focus of the day” – is to communicate with him openly, honestly, and specifically.
I’m not sure what it is that is making you feel like a burden or what is making it challenging for you to communicate your needs and desires. Maybe you have tried communicating and “it hasn’t worked.” Maybe you are frightened to bring this topic up, as many people can be when they feel vulnerable. It is very important for you and your husband to set aside a dedicated time, where you both feel safe and undistracted, so you both can talk about your concerns –remember, your husband will also have very real and valid concerns that he may (or may not) want to share. Be ready to listen and understand where he is coming from. It’s vital that you be honest and that you allow your husband the time to be honest, as well.
Most importantly, this cannot be a one-off situation. Things won’t change by having just one conversation. Repetition is needed, and reminding is needed- but the reminding must be in ways that you both can tolerate and that don’t make you feel like you’re nagging or being a burden. Your needs matter a great deal – make sure YOU know that. It will come across in the way you let your husband know.
I hope this provides some comfort that you are not alone in your feelings – they are very common. At the same time, change requires conscious adaptations in the ways you think and act. All of this is much easier said than done. That’s why I highly recommend couples therapy with a psychologist/counselor experienced in MS. I would also recommend that you and your husband find support groups to work through some of your issues.
I also recommend continuing to learn as much as you can about communication and the emotional issues inherent with MS – for people living with the condition and support partners. Can Do MS has some wonderful resources, including:
Webinars
The Physical and Emotional Aspects of Intimacy in MS
Library Articles
The Physical and Emotional Aspects of Intimacy in MS
Communication is a Two-Way Street
“I am so frustrated. I have lows almost every day that knock me out and require me to lay in bed without any energy. Then, without explanation, I get up and feel well. What can I do to manage these mood/energy swings?”
Answer by Gayle Lewis, Ph.D. – Psychologist and Can Do MS Programs Consultant
I'm very sorry to hear of your challenges. What you're describing seems to speak both to the depression and fatigue that often accompany MS, as well as the unpredictability of the disease. Having a chronic, unpredictable disease in itself can be very upsetting and overwhelming. Adding low energy, mood shifts, and uncertainty to the equation can understandably create frustration.
First, remind yourself that mood swings are a normal and quite prevalent symptom of MS. Hopefully, understanding that these issues are biological associations to your MS will make you feel less frustrated. Because these mood swings are caused by reactions in your body, they can be treated. YOU CAN BE IN CONTROL OF YOUR MOOD AND FEELINGS, rather than your MS controlling them. Speak to your physician about possible treatment options, including antidepressants or mood stabilizers (depending on what seems more appropriate). Here are some other tips that may help:
Mediation is a very regulating, calming and energizing activity that, again, YOU are in control of vs. feeling controlled by your MS.
Acupuncture helps deal with emotional and physical fatigue.
Speaking to a therapist regularly can be very useful in managing your feelings about your MS and offer ideas on how to deal with the disease in ways that are useful to you.
Add things to your life that allow you to feel empowered...this alone can have a wonderful capacity to bring you energy and strength.
Secondly, I would highly recommend you implement energy management strategies. It's very difficult to suggest that one conserve energy at times when you HAVE energy....but that's very important to do. Ideally, you'd like to motivate your system to be more in balance...and for YOU to be in charge, rather than your MS ruling your feelings. This might mean incorporating tools into your life that make doing chores easier and less time-consuming, getting help from others, and spreading your tasks out throughout the day. An Occupational Therapist can provide ideas about making tasks less energy-evoking.
Finally, it is important to be aware of your changing feelings, moods, and energy levels. Can Do MS recommends keeping a journal and sharing this with your healthcare team. People with MS and support partners are significantly at risk for depression, mood swings, and anxiety. These symptoms have been noticed as a major feature of MS for over 100 years, but are often overlooked by healthcare professionals. You have to be your best advocate and educate yourself. Can Do MS is a great place to start. They have some wonderful articles and webinars on managing depression and fatigue. The National MS Society also has an extensive library devoted to emotional changes and mood changes. I hope these ideas of of help to you.
“I read that couples with MS have a high divorce rate. How could a marriage counselor help my husband and I stay married and improve our relationship? Is there any research to prove that counseling can help people stay married?”
Psychologist Response: Gayle Lewis, Ph.D., ABPP,MSCS, Can Do MS Programs Consultant
For many reasons, MS can be stressful in a relationship. Whether or not this stress contributes to more divorces is unknown. While some studies show that over 70% of MS marriages end in divorce, it seems that the rate is more on par with the 50% divorce rate for the general population. Renowned MS psychologist and fellow Can Do MS Programs Consultant Roz Kalb believes "the divorce rate for MS couples may be lower due to a variety of reasons."
In terms of marriage counseling, it can be successful in strengthening relationships, but only if both partners come into counseling on the same page of wanting to preserve the marriage. If, on the other hand, each partner has different aims about whether or not to preserve the marriage, couples counseling alone cannot and does not have the power to reconnect the couple.
My biggest suggestions would be to communicate openly with your partner and to reach out to a mental health professional with experience working with couples living with MS (the National MS Society is the best resource for finding local support). If it is needed, there are family law attorneys who specialize in MS and other chronic conditions.
There are also many resources to understand and cope with the unique and very real impact that MS can have on a relationship. In addition to Roz's book, "MS: A Guide for Families," take a look at the following resources:
"Relationships & Communication" Can Do MS Article
"Relationships and Building Satisfying Partnerships" Can Do MS Webinar
"Multiple Sclerosis and Divorce" MS Connection
"Relationships" National MS Society Resources
“I feel very much alone in my MS world. I believe my husband wants to help and he does with "priorities," e.g. shopping, helping around the house, and walking the dog. I need him to treat me like his precious wife and remember the things that make me happy. I should be his priority; instead, I always feel like a burden. How do I get him to recognize that chores should not be the only focus of the day?”
Psychologist Response: Gayle R. Lewis, Ph.D., ABPPMSCS, Can Do MS Programs Consultant
It’s so difficult to be given a diagnosis that erodes your sense of control over your body and life, and even more so when you feel that the lens through which your partner sees you has changed so drastically- to be made to feel “special” because he takes on daily chores that perhaps you no longer can do yourself vs. feeling “precious” because of the love and connection you have with and for each other. Hard at this might be, the only way for him to understand this distinction – and to realize what you perceive to be his “focus of the day” – is to communicate with him openly, honestly, and specifically.
I’m not sure what it is that is making you feel like a burden or what is making it challenging for you to communicate your needs and desires. Maybe you have tried communicating and “it hasn’t worked.” Maybe you are frightened to bring this topic up, as many people can be when they feel vulnerable. It is very important for you and your husband to set aside a dedicated time, where you both feel safe and undistracted, so you both can talk about your concerns –remember, your husband will also have very real and valid concerns that he may (or may not) want to share. Be ready to listen and understand where he is coming from. It’s vital that you be honest and that you allow your husband the time to be honest, as well.
Most importantly, this cannot be a one-off situation. Things won’t change by having just one conversation. Repetition is needed, reminding is needed- but the reminding must be in ways that you both can tolerate and that doesn’t make you feel like you’re nagging or being a burden. Your needs matter a great deal – make sure YOU know that. It will come across in the way you let your husband know.
I hope this provides some comfort that you are not alone in your feelings – they are very common. At the same time, change requires conscious adaptations in the ways you think and act. All of this is much easier said than done. That’s why I highly recommend couples therapy with a psychologist/counselor experienced in MS. I would also recommend that you and your husband find support groups to work through some of your issues.
I also recommend continuing to learn as much as you can about communication and the emotional issues inherent with MS – for people living with the condition and support partners. Can Do MS has some wonderful resources, including:
Webinars
The Physical and Emotional Aspects of Intimacy in MS
Library Articles
The Physical and Emotional Aspects of Intimacy in MS
Communication is a Two-Way Street
“As my MS advances, I feel like I’ve become more of a spectator and burden to others. My husband spends all his time worrying about me and caring for me. He deserves more than this, and I feel like I'm not deserving of the time that I impose on him and other people. How do I deal with the guilt of being a burden to my family?”
Clinical Psychologist Response: Gayle Lewis, Ph.D., ABPP., MSCS Can Do MS Programs Consultant
Feeling that the people who support and care for you see you as someone who, for lack of better terms, is a pain in the ass in their respective lives is certainly an awful feeling and an all-too-common burden for people living with MS and many other conditions. However, I would suggest that the actual burden you are creating is more profound from your subjective perception than it is to them.
My first question – do you have any actual evidence that your husband and family see you and experience you as a burden? Has anyone actually said so or alluded to this feeling? The most direct answer to your question on dealing with the guilt is to communicate your feelings honestly and openly to your family, and provide them with the opportunity to honestly and openly communicate their feelings with you. A therapist can help facilitate this dialogue.
Yes, dealing with MS as the patient IS a big responsibility, accompanied by many daily issues to be dealt with, on your own and vis-à-vis the assistance of others.
And, yes, the stress of daily assistance can take a physical and psychological toll on the caregiver, causing caregiver burden. Caregivers are often reluctant to ease their burden and take care of themselves. However, early recognition of caregiver burden can help you and your loved ones determine appropriate interventions. Ultimately, your family loves you and they are invested in caring for each other. Focusing on “who deserves or doesn’t deserve” being part of this team is a zero-sum game. Instead, you can focus on the positives in the lives who have led together and will continue to lead in the future. The National MS Society has found that MS can draw partners more closely together as they provide deeply satisfying care and meet the challenges of caring for a loved one with a chronic illness.
Without being too much of a sideline therapist who knows nothing about you except the worry I feel in your question, could it be that you are projecting your self-hate and anger about what MS has taken away from you and complicated your life onto your husband and family members? In other words, are you assuming that they all feel taxed by your MS and its progression because you feel that way yourself?
Let’s say this is the case….and/or that your loved ones DO feel burdened and overwhelmed by your MS…I would recommend individual therapy for both you and your husband, as well as couple’s therapy for the two of you to talk about these things in a safe space. Group therapy would also be helpful to share with others going through the same concerns/experiences and learn from their helpful insights.
Again, this is cursory guidance as your situation requires individualized attention from a mental health professional. However, you have taken a great first step by recognizing your concerns and seeking information to cope. I hope you will continue to use Can Do MS as a resource. For more information, I would suggest searching these pages on their website for many helpful podcasts, webinars, articles, and talks about managing family issues and relationship matters when dealing with MS: https://cando-ms.org/?s=supporting+family+members+. There is also a great video on coping and managing complex care needs in advanced MS: https://cando-ms.org/resource/update-your-outlook-on-progressive-ms/.
If you would like help with any of these issues, call my office at 212-360-5675.
I prefer using email or texting only to arrange or modify appointments. Please do not email me content related to your issues of concern, as email is not completely secure or confidential. If you choose to communicate with me by email, be aware that all emails are retained in the logs of your and my Internet service providers. While it is unlikely that someone will be looking at these logs, they are, in theory, available to be read by the system administrator(s) of the Internet service provider. You should also know that any emails I receive from you and any responses that I send to you become a part of your legal record.
