My volunteering experience with Multiple Sclerosis patients.

Multiple Sclerosis (MS) is a disease of the central nervous system, affecting its functioning unexpectedly and repeatedly. It results in devastating disabilities in young people.

My volunteering experience started with studying and familiarizing myself with the disease and the effects of medications that are prescribed to manage the disease. I spent some time reading reports of previous volunteer counsellors to orient myself with the kind of issues patients and their families deal with. From the 8 clients that I was assigned to, what I have gathered was that most issues that persons with MS and their families experience in large measure are anger, fear, embarrassment, guilt, (especially in children with a parent living with MS) sadness, resentment, depression, helplessness and isolation.

Because of varying degrees of disability in MS persons, counselling is by and large conducted telephonically and only occasionally face-to-face. All the clients with the exception of a couple were new members to the Society I volunteered with. Conducting telephone counselling, I found subsequently was an advantage for me as a counsellor, since clients were able to speak more openly about their issues and problems. From sessions with these clients and their caregivers and family members, I am narrating below client issues that most challenged me.

Initially there were some challenges of a more administrative nature that were presented in that some clients and their caregivers expected a volunteer counsellor to know what financial assistance was likely to come their way and for what duration of time. The immediate concern of a client was financial because of the uncertainty of attacks, the duration of treatment, tests and medications (which are quite expensive).

Another issue was being asked if it was possible for me to relieve the primary caregiver at least twice a week for a few hours, so that ‘chores’ could be completed. This was especially in the case of caregivers with clients whose extremities were severely affected from an attack, and/or clients who had disabilities that prevented the client from eating/drinking. Counselling was not considered to be important enough, in the face of the day-to-day functioning of the family.

Beyond the above few challenges, there was very apparent satisfaction and gratitude from the family members and MS patients for the calls they received from me once a week. I found that especially family members welcomed my calls since they obviously have no one to talk to openly about MS and the anxieties that the members of the family feel. There were several references made to stigma and embarrassment about having a person with MS in the family, and how difficult it was to keep this information from neighbours especially. Of the questions asked of me, the most common was “Is there ever going to be a cure for the disease?”

This required that I visit and procure additional information about MS from a neurologist, who provided me with information and suggestions on how to address queries on MS in a positive and encouraging way. This doctor was kind enough to allow me to refer him to my clients with persistent need for information on their medications and physiotherapy.

I have outlined the conditions that affect the family members caregiving MS persons. All primary caregivers were asked if they would agree to talk to me about their situation and these caregivers who consisted of parents, a sibling and a spouse very readily agreed.

Caregiver concerns:

Anxiety and stress: In the case of two sets of parents of two clients (both girls) – exceedingly high levels of worry. The mothers spoke of experiencing physical discomfort with muscle tension and pain and with chronic problems sleeping. One of them was on medication to sleep and she had been taking this medication for three months (soon after her daughter was diagnosed). Culturally, having a daughter means extra responsibility for parents to arrange a marriage for her into a good home from the time a girl is born into a family. The prospect of no one marrying a person with MS seemed to bring on the anxiety disorder. Anxiety and high levels of stress was apparent in the mothers, causing their relationships within the family and extended families, to suffer. The anxiety also causes social problems with neighbours – fear of meeting people, becoming secretive with people who asked after the person with MS, etc. One of the mothers is suffering from depression and panic attacks. One mother was hospitalized with high blood pressure and chest pains in the middle of the night. She has admitting to speaking to her daughter with MS about how much more preferable death would be to living the way they were.

During these sessions I have endeavoured to bring out the dangers of parents or other elders in the family passing on and transferring fears to the MS person through their verbal and non-verbal communication, and that it would be hard for the child with MS to cope with her own disease if the parent is so fearful. Parents conveyed a willingness to learn how to improve their situations and it was fulfilling to see improvements in relationships of caregivers and their children. I also found during my interactions with family members that there were much lower levels of anxiety in fathers and male siblings. Perhaps, the reason is that male members of the family do not handle the personal care of female MS persons in a home.

There is one particular case that has troubled me. Recently, during my information gathering of new patients , I was given to understand that a client (a girl) was being ill treated by her mother and that she needed immediate attention. On talking to the mother first and then the client, I found that my client was indeed covering up for her mother by telling me how much her mother loves her and how well she looks after her. When I spoke with the mother, I found her to be coldly factual about her situation (in relation to her daughter) and insisted that whatever was happening would definitely pass and that the doctors merely wanted to make money so they were exaggerating the extent of the disease. She said that as of now, they were both doing fine, and didn’t require me to check on them every week. Subsequently I met the client at a MS function and I was quite shocked at the extent of dysfunction and disability that the girl had, and realized that I could not help this person over the telephone. The father, who accompanied the client was deeply sad and was reluctant to talk. Other MS people tried to draw the father into conversation, but were unsuccessful. Basically, the mother is not prepared to spend any money on medical care for her daughter, and even though her father was prepared to do more, he was not being allowed to ‘add to their expenses’. The mother’s sentiment is that the parents were feeding and housing the girl which was more than most people do for their children. I had to discontinue contact with this client so as not to agitate the mother and make it worse for the girl.

I was not completely prepared to encounter callousness from a parent. Though I reminded myself often not to be judgmental, it was very hard indeed not to judge and be angry. This case drove me to look for solutions to alleviate the physical discomfort of the girl, more than worry about her mental state. Previous to our meeting, the client would talk about everything else but her home and family. Since I did not have a supervisor to voice my concerns to, I must admit, I found it easier to concern myself with the girl’s physical condition, rather than counselling her for the psychological trauma that she must surely be experiencing. This shortcoming on my part is something that I must seek help with in future cases of this kind.

Persons Living with MS

Anxiety, worry, fears in persons with MS were related more to the following factors

Anxious and guilty about having parents do so much. A client said, “I can’t hold even a glass of water even though I am an adult, I am dependent on my mother who is already unwell with high blood pressure. I don’t know how long I can take this”.

Fears of the condition worsening in the coming years. “I was diagnosed with MS this year on my 21st birthday, after two episodes. The initial diagnosis was brain fever, and for the past two years no one was able to tell us what is happening in my body. My life has changed and I am told that it can’t get worse, but my limbs are now not functioning”. This condition has made the client dig deep inside to be positive. When talking to her about her hobbies before she fell sick, she said she was interested in singing and music. We worked on a plan and within a few weeks she had located a teacher close to her home. Six weeks later, she sang before an audience and got out of her chair to do it. She continues with her music and sounds excited that even though she can’t get herself to the college, she has met up with many more people with an interest in music.

Suggestions to my clients to start breathing exercises and yoga have proven beneficial for at least three of them. The exercises have dispelled many fears and anxiety. This has helped in easing sore muscles, rapid breathing when excessively anxious and fearful, etc. One of the clients and her mother has reported being able to sleep better after the exercises. When asked how they were coping with the family and neighbours, they said that now they feel they don’t need to hide the disease and don’t care as much what people think. The client’s sibling brother has been more supportive, and he said that it’s because the client was ‘trying’ to get out of this – “she is making a great effort” – so he helps set up and stand by while mother and daughter exercise, to help prevent falls etc. I believe that this strategy has helped the client learn to face her illness realistically and directly, thus reducing the fear associated with her thoughts. Initially, when suggesting the exercises (Youtube exercises), I thought I was being too simplistic in my approach and that such deep fears need to be addressed in a more technical way. Even though monitoring is essential in such cases, telephone counselling throws up the disadvantage of not being able to read a clients facial expressions and body language when she says that she is comfortable with just exercising.

I have identified grief at the loss of a ‘normal’ life in all the clients. This seemed a bit excessive even to my mind, but through each session with my clients and their parent/s, I felt that I could only explain the emotions that I heard over the telephone as grief. They are in the process of grieving even after 4-5 sessions each that I have had with them. I revisited the chapters on grief from my study material, to ascertain if I might approach my client as ‘grieving’. Even though grief refers to a psychological reaction to bereavement and death of a loved one, I felt that it equally applies to a person who has been diagnosed with an incurable disease at a young age – and grieving the loss of how it was before the disease and how it will be in the years to come would be a natural emotion for a person to feel. This occurred to me because my clients were pretty much stuck on how it used to be for them and now they have lost friends, dropped out of school/college, have very little interaction with the world around them, etc. There is also little prospect of their resuming normal activities if the disease is progressive.

They have admitted to feeling very deeply sad and depressed on certain days, intruding on even their normal everyday functioning – some of them have expressed no desire to eat, bathe, talk to anyone — and on other days they feel ‘better’. There has also been unrealistic longing for their past life. In this situation I have asked my clients to reconnect with their old school/college friends on the phone and tell them they are keen to have these friends visit and keep in touch on the phone/email because my clients need them to get through this time of their life. When I asked what they had talked to their old friends about, I was told that the friends were initially awkward and didn’t want to talk about themselves, but some have called back and gradually there has been an improvement in their interactions. I am still working on this theory of ‘grief’ and am keeping close track of results. With sustained behavioural changes, I believe avoiding past associations because of fear of reliving memories of when my clients were ‘normal’ will help them gain in self confidence.

Physical pain and intense discomfort that MS is causing my clients is another issue that required me to empathize with. Simple movements hurt and clients feel guilt about expressing this to their family caregivers. It is impairing daily living. Also my clients have found that even their parents question the legitimacy of their pain. Given the impact that pain has on the quality of life, depression and anxiety increases. One client said that she preferred to stay in bed for two days because it was easier to say she is tired while fighting the pain in her lower limbs. She said that she feels guilty about talking about pain, because taking care of her other disabilities (trembling of hands and loss of sight in one eye) was sufficient and more work for her mother. All I can do during sessions such as this is listen to the client and empathize. Other activities suggested like watching films, listening to music, taking a warm bath etc. were not taken well and my client was almost dismissive of these suggestions. I found that conducting a session on the telephone when dealing with the issue of pain, was not the most ideal. A face to face session would benefit in that the client can observe empathy and understanding of her situation. At a function for MS patients, a number of doctors were fielding questions and my client spoke extensively about pain and how to manage it without medications. The doctors suggested that she visit with them once a month and use ice packs! She looked upset as if she expected a less ‘practical’ reply from doctors. Volunteer social workers to spend time talking, reading etc. with clients in pain might help in cases such as this. Recently I called the client and informed her that an inspirational speaker and life coach was conducting a day long workshop (free of charge) and would she like to attend. I know that this coach will be teaching meditation techniques, and felt that my client might benefit from learning this modality. She readily agreed to attend.

By and large my volunteering with this organisation has given me invaluable information on real issues that people with long term diseases have. It has also given me opportunity to identify and examine my own feelings and emotions in relation to the clients that I have been talking with. There is a lot more to learn. I know that I need to take care of myself and my emotions so that I can help clients deal with their emotions better. In the coming weeks I will be the client to a counsellor in my neighbourhood — it will be a relief to unburden myself.

Janet Sunita