Abstract

The purpose of this study was to explore the lived experiences of women living with multiple sclerosis and their perceived barriers to accessing physical activity. Seven women were invited to complete a background questionnaire and a semi-structured interview to discuss these experiences, and to examine any perceived barriers (i.e., internal and external) that they encountered in relation to physical activity. The key themes that emerged from the interpretive analysis were the apparent importance of: 1) self-management; 2) treatments; and 3) attitude, when accessing such opportunities. The findings suggest that it is important for physicians to understand the patient's experience of living with multiple sclerosis and the impact of the disease can have on other aspects of their life (e.g., access to physical activity). Acknowledgement of this experience and the issues that these women struggle with on a daily basis could enhance the physician/patient relationship, and encourage a more collaborative effort in terms of establishing an illness management plan for navigating the illness journey.

INTRODUCTION

Multiple sclerosis (MS) is the most common disabling neurological disease of young people.1 According to the Multiple Sclerosis Society of Canada [MSSC]2, approximately 55,000-75,000 Canadians currently have MS, and an additional 1,000 new cases are diagnosed each year.. The National MS Society3 estimates that 400,000 Americans have MS, with 28 people being diagnosed each day in the United States. Worldwide, MS is thought to affect more than 2.5 million people3. MS is three times more likely to occur in women than in men, and is most commonly found in people of northern European descent.

MS is an unpredictable, often disabling disease of the central nervous system in which the body attacks its own nerve cells. Researchers believe that the body's own immune system mistakes the myelin sheath and underlying nerve fibres for a foreign substance, causing immune system cells to become activated and to start attacking nerves of the brain and spinal cord.1 The resulting inflammation causes the flow of nerve impulses along axons to be interrupted or destroyed. The exact biological trigger remains a mystery and there is currently no cure. The symptoms of MS are highly unpredictable and vary widely among individuals, often making a definitive diagnosis difficult. Some of the most common symptoms include: fatigue, spasticity, cognitive problems, numbness, short term memory loss, poor balance and coordination and partial or complete paralysis.2

There are four clinical courses of MS: relapse-remitting, primary progressive, secondary progressive, and progressive-relapsing. The two that were explored in this study were relapse-remitting (RR) and primary progressive (PP). Relapse-remitting is the most common form of the disease affecting approximately 75% of all patients with MS. It is characterized by clearly defined attacks known as relapses, and is followed by complete and/or partial recovery.1 Progressive MS is characterized by a slow but continuous worsening of the disease, with or without relapses. Primary progressive, in particular, indicates that there is a continuous worsening of the disease from the beginning, without clear relapses or remission1. As with any type of MS, there is still a great deal of variability among patients with both RR and PP in terms of the rate of disease progression and the occurrence of occasional plateaus and/or temporary improvements.

Previous quantitative research on the topic of MS has typically focused on the clinical aspects of the disorder, for example, the effectiveness of medicinal treatments,1,4 rehabilitation programs,5,6 and various physical activity interventions. 7-9 Existing qualitative studies in the area have focused on perceived health status and quality of life,10,11 but few have addressed how one manages the condition over the long term. Physicians have difficulty assisting patients with this long-term management of the condition, due to the variability of symptoms and the absence of uniformity in disease progression. Patients may experience many improvements and/or setbacks along the way, all of which need to be managed in the context of their everyday life. Patients often look to their physicians for advice in terms of managing their health, so it is important for physicians to understand their lived experience and the magnitude of the effects MS can have upon all aspects of one's life.

Research in the area of coping strategies for managing MS mainly focuses on cognitive coping styles. Many studies have found that the way patients' cope with MS may help to explain differences in their ultimate adjustment to the disease. In particular, it has been stated that a problem-focused coping style leads to better adjustment and decreased distress towards chronic illness, whereas an emotion-focused coping style leads to poorer adjustment and an increased incidence of depression.12-14 There is limited research addressing how the disease impacts patients on a daily basis and the specific coping behaviours they use to manage its symptoms, not to mention any access issues they may face in relation to physical activity. It is essential to have a thorough understanding of all aspects of this disease and its impact on those who are living in its shadow. As such, it is not sufficient to merely address cognitive coping styles. Although these do provide some insight into the experiences of individuals with MS, they do not provide the complete picture.

In an online search of PsycINFO, MEDLINE, and Social Sciences Citation Index (April 15th, 2009), using the search terms lived experience and multiple sclerosis, only 11 peer-reviewed articles were cited. Common themes among these studies included: the devastation caused by the inherent symptoms,15-20 loss of control,15,20 dignity issues,20-22 and the importance of self advocacy.15,16 Another interesting finding was the reported importance of health care providers throughout the illness journey, according to patients.19,23,24 As a result of this stated importance, it is essential that these health care providers understand the lived experiences of the individuals they are treating, in order to properly intervene and/or support them throughout their illness journey.

Despite the valuable information provided by these qualitative studies, only one focused specifically on the lived experiences of individuals with MS in relation to exercise18, even though exercise should be a critical component in the lives of this particular clinical population, just as it is for all individuals in general. It is evident that there is a gap in the body of research exploring the lived experiences of individuals with MS in relation to their physical activity participation. The purpose of this study was to explore the lived experiences of women living with MS and their perceived barriers (both internal and external) to physical activity. According to Patton,15 lived experiences are derived from having directly experienced a phenomenon of interest. Although this study explored many aspects of this lived experience, the focus of this paper will be to examine the specific coping strategies they used when managing their MS, in relation to their participation in physical activity.

METHODS

The theoretical orientation guiding this qualitative study was phenomenology, which addresses how "human beings make sense of experience and transform experience into consciousness, both individually and as shared meaning" (p.104).25 Once ethics approval was granted by the academic institution, seven women were recruited to participate in this study. The participants were recruited through snowball sampling and advertisements posted at a local neurologist's office. Both methods are forms of purposeful sampling, and therefore focus only on those individuals living with and managing the condition [i.e., information-rich cases].25 The inclusion criteria for this study were: females between 40-55 years of age who had been formally diagnosed with either PP or RR multiple sclerosis, a minimum of two years prior. This age range of women was specifically chosen to target those women who were at the end of their reproductive cycle and who would be in a similar life stage, in terms of their family dynamics. The authors believed this would further enhance the overall homogeneity of the sample, and help to rule out a number of extraneous factors that could have ultimately influenced the findings (including the effects of menstruation on the illness and also the differing time and energy demands surrounding rearing young children, as opposed to older children). Once data saturation was achieved, recruitment was terminated.

There were three forms of data collection employed in this study: a background questionnaire, a semi-structured personal interview, and field notes. Upon consenting to participate, these women were asked to fill out a background questionnaire prior to their interview, in order to gather general demographic information such as health status, lifestyle behaviors, and additional information pertaining to their specific condition. The semi-structured interview guide consisted of 27 open-ended questions relating to their current level of physical activity, the limitations they face when accessing physical activity, associated stressors, coping mechanisms, and their perceived quality of life. All of the interviews were conducted by the second author. Six of these interviews were conducted in the homes of the women. One of the seven interviews was conducted over the phone. In this case a face-to-face interview was not possible, due to the fact that this woman lived out-of-province. The interviews lasted from 19 to 53 minutes in length, with a mean length time of 41 minutes. Each of the seven interviews were digitally recorded and later transcribed verbatim. The field notes were recorded by the second author immediately following each interview, to provide contextual information for the final analysis.

Phenomenology was the guiding theoretical framework for the data analysis. The research team read and analyzed each of the transcripts independently, meeting regularly to discuss the emerging concepts and themes. Once the researchers had reached consensus on the key concepts and themes in the data, they then compared the data between subjects, highlighting the various emerging trends.

In qualitative research, credibility establishes a level of truthfulness or integrity of the findings. Data and investigator triangulation were used to increase the credibility of the findings in this study. Data triangulation involves the use of different sources of data/ information, in this case the use of the background questionnaire, transcripts and the field notes. Investigator triangulation involves assembling the researchers and comparing the findings found by each researcher; if the different researchers arrive at the same conclusion, then credibility has been enhanced.26 Where possible, indigenous categories (as defined by the participants) were used to describe the emerging themes and trends, making emic analysis possible25. The authors met regularly to discuss the trends in the data and to establish themes, as described by these participants. The authors also dispensed with personal and professional biases through ongoing discussion, which also enhanced the credibility of the findings.

Limitations

Due to its qualitative nature, this study precludes any efforts to generalize the findings widely. Despite this, it does provide some valuable insights into the lives of these women and their many struggles as they navigate the disease course of MS. This study focused exclusively on women and the authors acknowledge that the experiences of men with this disorder are equally important and should be examined as well. It is also important to recognize that all seven of the participants were Caucasian. Inclusion of a more culturally diverse population is warranted, as health behaviors may vary significantly among different cultures. This homogeneity was beneficial for controlling extraneous variables, however understanding cultural diversity in the context of MS is an important piece of the illness management puzzle. Lastly, the varied length of the interviews should also be acknowledged. One of the interviews was 19 minutes in length, and this was significantly shorter than the other six. Despite this discrepancy, the authors do not feel that this had a significant impact on the importance of the information conveyed by this particular participant.

Although this study was meant to represent women at varying stages of the illness, only one of the seven participants had advanced to the point of requiring a wheelchair. As such, the data she provided in terms of access to physical activity was quite different from the participants who were fully ambulatory. Future studies should address the different stages of the disease, making comparisons based on this factor and how this may differentially affect their ability to access physical activity opportunities and ultimately influence their resulting coping behaviors. Finally, the range of time since diagnosis for these women was from 2-9 years, since the only stated requirement was that they be at least two years post-diagnosis. A sample of participants who have been living with this condition for a shorter or a longer period of time may result in significantly different findings, and it is necessary to investigate their experiences with this illness as well.

FINDINGS

Table 1 describes the seven women who participated in this study. They ranged in age from 41-55 years, with a mean age of 50.4 years. Time since diagnosis ranged from 2 to 9 years, with an average of 5 years. Three of these women had PP multiple sclerosis, while the other four had RR multiple sclerosis. Four of the participants maintained a full-time work schedule, two were employed on a part time basis, and one participant did not work. Six of the seven women were married and one was divorced. The sampling criteria used in this study allowed for a reasonably homogeneous sample, which assisted in controlling for extraneous factors which may have had a significant impact on the results. The women who participated in this study provided a wealth of rich information illuminating what it is like to live with this disorder.

Table 1: Demographic Data
ParticipantAge(yrs)Yrs since diagnosisType of MSMarital StatusEmployment Status
Rachel528PPDivorcedF/T
Andrea559PPMarriedSelf-employed P/T
Karen546RRMarriedF/T
Christine556PPMarriedNot Employed
Susan463RRMarriedP/T
Sabrina412RRMarriedF/T
Isabella509RRMarriedF/T

Three major themes were identified through the data analysis process in terms of coping mechanisms used by these women when dealing with symptoms related to their MS and their involvement in physical activity. These themes were: self-management, treatments, and personal attitude. Each will be discussed in turn.

Self-Management

A common theme found in the transcripts of these women was that of self-management. These women defined self-management as managing their condition through the avoidance of excessive physical exertion, and through capitalizing upon the social support provided by family and friends. Many felt that their physicians did not provide them with much support in the way of managing their disease and its accompanying symptoms. The sub-themes of this category of self-management were: lack of physician guidance, personal accountability, and social support.

Lack of Physician Guidance

Most of the participants stated that their diagnosis came as a complete shock. They also reported that after having received their diagnosis, their doctors did not suggest a treatment plan in great detail, other than to outline possible medications to take. In terms of self-management, the participants described a lack of guidance from their physicians at a time when they needed it most. As if receiving a diagnosis of MS were not enough, they now needed to consider how they would manage this chronic, life altering illness on a daily basis. Needing concrete answers from their physicians, they were only left with many unanswered questions on how to best treat their condition.

No, my doctor doesn't suggest anything…he had no advice to give me so again, there I was tearful again…about what to do.

The only thing bad was the neurologist…he um he didn't really give me anything to go on, he said ah when I was leaving he goes, 'Maybe you could call the um the MS clinic'?

Clearly, these types of responses from their physicians were not helpful when these women were looking for concrete suggestions to manage their illness proactively, and their resulting distress and frustration was palpable in their descriptions. The reason these women felt they needed to self-manage their condition was due to their perception that their physicians had left them in the dark about where to go and what to do next, following diagnosis. This seems to indicate that there is added stress placed upon the patient unnecessarily, when receiving their diagnosis. They expressed the need for more support and information from their physicians at this critical juncture in their lives, and upon receiving none, felt lost.

Personal Accountability

The second sub-theme of self-management was the personal accountability of each of the participants. Most of the participants described being able to control their symptoms by avoiding physical exertion, since this exertion often worsened their symptoms or caused them to relapse.

That last relapse was in October 2006… I think it was after I did the breast cancer run because I really overexerted myself. I never want to overexert myself with exercise at all because I'm afraid it will bring it on…my thinking now is do what you can do and that's all you can do.

I think you have to be careful…because you are in danger of compromising the other aspects of your quality of life…you just have to find that proper balance… it's such a no brainer to me. 'Do I want to vacuum or do I want to play with my grandkids, because I won't have the energy to do both.

It was evident that there was a fine line between beneficial amounts of activity and overexertion, and it was up to them to prioritize the type and intensity of activity participation.

During their interviews, most of the women stated that they had made a conscious decision to be physically active on a regular basis, although their definition of what constituted physical activity may have changed somewhat. One woman explained that her activities of daily living provided her with as much physical activity as she could manage. Others described that when they pushed themselves to do too much at one time, they often experienced a worsening of symptoms and in some cases, an actual relapse of the disease. It was clear when speaking to these women that the benefits of physical activity were well known by them, and served as a motivating factor for being physically active, but they avoided pushing themselves beyond their limits. Throughout these interviews, many of the women described the adjustments they had made to their lifestyles since their diagnosis, especially when it came to doing any activity in relation to housework. Several of the women described having to spread out their homemaking tasks over a number of days, to allow for adequate rest in between tasks and to avoid pushing themselves too far beyond their limits.

Social Support

The third area in which these women were able to self-manage their condition in relation to physical activity was through social support. In speaking with this group, it became quite apparent how integral their friends and family were in providing necessary support.

I have very supportive parents…I stayed at my mom's…when I was having cognitive problems. I couldn't count my medication and so we thought it best I stay there um while my husband was working.

By committing to do [physical activity] it gets you out, it gets you socializing. I just try and keep in contact with friends and family…I get to the point where I don't like my whole life to be MS, you know? I like to do things that are not MS-related. I think you need to learn that there are other parts that you can still enjoy.

Support could also be found in the workplace. When asked if they thought their employment affected their quality of life, these women replied:

You know it keeps me on the ball, it keeps my mind functioning um so that I'm not lazin' around or not really doing nothing. I think sometimes, I think yeah, slow down which my boss is always for, when I need it.

They're very good. If I'm really tired, I go down to a room and I have a sleep. And ah oh no, my work has been wonderful. I never complain about my boss…if I went to him tomorrow and said I'm gonna change my hours, he'd say fine.

It is evident that these women seek both physical and emotional support from friends, family, and work colleagues to help manage their MS both on a regular basis, but even more so when symptoms worsen. This support appears to offer a great deal in the way of enhancing their quality of life in both personal and professional settings.

Treatment

There were three major sub-themes in relation to the types of treatments used by these women. Allopathic medicine, complementary and alternative medicine (CAM), and physical activity were reportedly the main types of treatments used by these women.

Allopathic Medicine

There is currently no reliable 'gold standard' in terms of allopathic treatments available to modify or change the course of the disease in progressive sub-types of MS, but there are other therapies that may ease many of the symptoms that individuals' experience. Until the mid 1990's, intravenous steroids were the only treatment available for people with MS.3 Today, several MS-modifying therapies are available. There are FDA and Health Canada approved therapies that reduce the frequency and severity of MS relapses, including: Avonex®, Betaseron®, Copaxone®, Rebif®, and Tysabri®.2,3 Novantrone® has not yet been approved to treat MS in Canada. Two of the four women with RR were taking MS modification therapies (Rebif® & Betaseron®) at the time of the interview, while the other two RR patients were taking other pharmaceutical drugs to treat symptoms such as balcofen® for spasticity and detrol® for bladder urgency.

One woman described her experience with Copaxone®:

I decided not to take anything anymore (laughs) you know 'cause … I felt like I was going down [hill] and when I decided not to be on anything else I just kind of, ah, gave my body a boost… I just opted not to and now I am feeling better.

Complementary & Alternative Medicine

In terms of CAM, all of the women with PP reported that they had tried massage, chiropractic treatments, and physiotherapy. One participant used acupuncture whenever her symptoms worsened, while the other two women reported massage being the most beneficial alternative modality for their symptoms. A few of the women with RR found CAM to be mostly advantageous for relaxation purposes, but not overly effective during a relapse. This seems to suggest that CAM's benefits may be limited to relieving stress and improving psychological health, rather than directly influencing the disease course and its associated symptoms.

Physical Activity

Physical activity is known to have many potential health benefits, including: increased muscular strength and endurance to help maintain independence and functional ability; improved cardiovascular function; increased flexibility; weight management; improved mood and decreased risk of depression.27 The vast majority of these women reported participating in physical activity on a regular basis. Four of the women reported using physical activity as a form of treatment for their MS, while two other women reported that they engaged in physical activity to lose weight. Those who did exercise regularly, reported walking, swimming, stretching, and resistance training (at a rehabilitation program) as the main types of physical activity they engaged in.

I just exercise to keep mentally well…it's for me and to keep me sane and um reduce my stress level…I need some downtime and that's the way I get it.

I'm just getting some physio and some exercises you know to try and gain my strength….I feel good that I've done that for myself like you know it, it's psychologically good for me I think, I feel I'm doing whatever I can do to improve and keep myself on track and that's important I think to know that you're doing all you can do to keep your quality of life intact.

It [physical activity] does make a difference. I notice I can move better, I know definitely and then you just feel better you know and then I know if I don't do it, I can tell a difference… I know that every morning I need to do it and that's what I do, I have a routine every morning that I do.

I think it's only going to make me feel better and get through this a lot easier than if I were to sit around and "veg"… I find that I feel I have more energy because that's also one of the symptoms that affects me is the fatigue um and I find that I can get very drained very easily and I just find with doing any physical activity that that so to speak, pumps me up.

One can see that physical activity is used for more than just the physical benefits, but also to improve their psychological health by providing an outlet for stress management and to improve self-esteem and self-efficacy.

Personal Attitude

The third common theme that became evident during the data analysis process was the personal attitude these women held about their condition, as well as their perceived future with MS. The three common sub-themes of attitude were having a positive outlook, a sense of determination, and the mantra that "it could be worse".

Positive Outlook

The women in this study provided powerful descriptions of how they felt about their current level of health and independence. They described feelings of thankfulness, gratitude, and appreciation.

I am grateful I I don't have some of the worse things that I know some other people have experienced… I just have to feel and think positive in my head… I am doing whatever I can now and staying positive and focused.

My attitude was I'll be back to normal and that's always my attitude with any attack I have that well I know I have an attack right now, but it's going to come back… I am thankful for being so healthy.

These passages illustrate that these women have not only accepted their condition, but can be appreciative and grateful for what they do have, regardless of their stage or level of disability. The vast majority of women in this study mirrored this positive outlook and the impact it had had upon their lives while living with this condition, which helped them to better cope with their disease.

Determination

Many of the women described the desire to live a life where they were not reminded every day of their condition. They wanted to lead a normal life, in which they still felt capable and independent.

I have to plan my day. If I'm going to the mall then I decide what stores I'm gonna go to, 'cause I know that I'm only good for such and such amount of time and so I have to plan you know what I'm doing…I'm determined that I'll do it… You have to keep pushing yourself.

While discussing what she feels is her largest barrier to physical activity, one woman said:

I would say you know whether it's being um, helping with homework, truthfully nothing has stopped me so far… I did [the breast cancer run] as a personal goal to see how quick I could do it. I was so proud of myself at the end and that's what I was doing it for… Your body doesn't feel the same you know um when I feel numb, numb and tingly, like I can honestly say that I don't really think it stopped me um but it [is] a reminder.

It appears that these women are determined not to let their MS diagnosis get the better of them or to consume their lives. They have a sense of determination to lead a life in which MS is not the central theme, and where they can live their lives to the highest possible standard.

"It Could Be Worse"

Along with the appreciation and determination that these women felt for their current level of health and for the capabilities and independence that still remained, they had an attitude of "it could be worse". This attitude seemed to contribute to their sense of optimism.

I thought it was a brain tumour….I'm pretty damn lucky cause I could be in a wheelchair, I could be blind and I could be so so so bad and I'm very thankful and I'm very lucky for the point that I'm at and what I have.

If anything, it was a relief. Finally hearing the type, I was able for me to go back and really do some studying on it and it… finally knowing it was the primary progressive as opposed to all the others, 'cause before you hear anything you're thinking ok, I could wake up one morning and not see, I could wake up one morning and not be able to walk. But knowing that this is the primary progressive one, I am not expecting that to happen. So I think I'm a little more comfortable with this than anything.

[The diagnosis] was almost a relief because some of the other things were kind of scarier, that it could've been you know… It could be worse than this you know, it kinda well at least it's only MS at that point, 'cause there were all these other horror stories of what it could've been, you know?

It was evident that these women had a more positive and appreciative outlook of their condition, when comparing it to the worst case scenario. So much so was this the case, that it was not uncommon to hear that their diagnosis of MS actually came as a relief. This was not true for all of the women studied, but several did report this to be the case.

Discussion

The key finding in this study was that the participants wanted concrete guidance in terms of managing their condition and its associated symptoms, particularly from their physician. This desired input would have helped them to feel less alone in the treatment decision making process. This finding is consistent with research done by Vickrey and colleagues28 who found that adults with MS experience substantial unmet informational needs. In a study conducted by Lode and colleagues,12 43.2% of participants reported that they were dissatisfied with the information by the time of diagnosis and found coping styles in patients with MS relate to the quality of information given at the time of diagnosis. Many of the women in the present study proceeded to report that they later came upon the information originally sought from their physician, through the MS Society (either through the website or from participating in meetings at their local chapter). Because these women had originally looked to their physician for this information and since the person conveying the message seems to add credibility to the information provided, this would indicate that physicians should better inform themselves of the broad spectrum of treatment options (including physical activity and CAM) in MS, in order to adequately meet the needs of their individual patients with MS. This finding has been confirmed elsewhere in the literature30 and appears to be a prominent concern for patients. Knowledge is power: if patients feel they have complete and accurate information, they will feel better able to take control and make informed decisions in relation to their health.

These women initially felt as if they had been left in the dark in terms of where to go and what to do upon receiving their diagnosis. It must be noted, however, that the case of MS is a difficult one for physicians to predict. In order to provide concrete advice about how to manage this condition over the long term, these physicians would need to know the rate of progression and the expected extent of disease progression over time. Due to its variable nature among individuals (and even within the same individual), it is near impossible to predict progression with any level of certainty. Despite this, general recommendations should be established which these physicians could provide as a starting point for patients. In addition to describing potentially beneficial treatments, physicians should also discuss with their patients the impact of even small changes in behavior. One such suggested behavior change could be the addition (or maintenance) of physical activity in one's life. Being active is important for everyone, despite their clinical status. Family physicians and neurologists should make discussion of this particular behavior change a priority when talking with patients about their long term illness management strategies. In fact, formally prescribing physical activity as part of the illness management plan may be warranted, as physical activity has been shown to improve many different measures of one's health including quality of life and the maintenance of independence and functional abilities in populations with chronic conditions, including MS. 7-11

One drawback for physicians who may want to recommend (or prescribe) physical activity to patients as part of their illness management plan is that there is a fine line between an appropriate and beneficial amount of exercise and overexertion. Some participants reported feeling afraid that they may physically exert themselves too much, which could exacerbate their symptoms and initiate an attack. As such, the level of physical activity should be perceived by the patient as being moderate and may not necessarily meet the recommendations of a standardized level of intensity for someone their age. As such, collaboration between the physician and the patient's chosen exercise professional (i.e., personal trainer, physiotherapist, etc.) may be warranted, to ensure a healthy level of activity for the particular individual involved. To ensure that this collaborative effort is effective, it would be necessary for the exercise professional to have some degree of knowledge of MS and its associated symptoms, in order to meet the distinct needs of these patients.

In terms of one's state of mind, Scheier and Carver29 argue that optimism plays a protective role in chronic illness by promoting more beneficial health outcomes, health habits, and effective disease coping. For example, optimism is not only associated with less severe physical symptomology, but also with electing to follow health-promoting practices in coping with one's chronic illness. This was evident within this sample, where most of these women chose to be physically active. In fact, only one of these women had a predominantly negative outlook on her condition and perceived future, and this same participant was the only one who chose not to participate in regular physical activity.

Conclusion

The purpose of this paper was to explore the coping mechanisms used by women living with MS, in relation to their participation in physical activity. The findings highlight the stated importance of informative dialogue with a physician at the time of diagnosis, as physicians have the potential to do much more for these women than just prescribe medications. Acknowledging the key importance of doctors' role in assisting MS patients with the day-to-day management of their condition is essential, if physicans hope to have a beneficial impact on these women's overall quality of life. A more in-depth discussion of potential lifestyle changes between the physician and the patient from the start could potentially lead to improved coping strategies and efficient self-management of the condition for people living with MS. In speaking to these women it is evident that most have not only accepted their condition and what it means for their future, but would also have modified their way of life and taken on., in a sense, a new life since receiving their diagnosis. These many strategies may be helpful to covey to others waging a similar battle.

Acknowledgement

We gratefully acknowledge the financial support received from the Science and Technology Endowment Program (STEP). We are also truly indebted to those women who offered their perspectives on this issue and who allowed us into their lived experiences. Lastly, we would like to thank Dr. Patricia Mandalfino for facilitating contact with participants. Without your help, this project would not have been possible.

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