While most people think about the physical aspects to having a disease such as Multiple Sclerosis, quite often the emotional and psychological aspects get ignored or shoved to the side. The literature gives stats which show that more than half of all people who have MS also suffer from some form of depression. This depression can be due to the emotional aspects of dealing with having a chronic illness, but it can also have a direct physiological cause from brain lesions interfering with those areas of the brain which affect mood.
We are neither purely emotional nor are we purely biological beings. We humans are a very intricate and multi-dimensional in that our biology affects our psychology and vice versa. I will make the bold statement here that if you have Multiple Sclerosis, there will be psychological issues to work out.
To kick off this new year I want to delve more deeply into how MS affects mood and what you can do about it. In order to help me with this daunting task, I have sought out people working within the mental health field such as “Clinical Psych,” a psychologist and blogger devoted to issues of how mental health is affected by physical illness. Having a chronic autoimmune illness herself, Clinical Psych has first hand experience coping with chronic illness and the impact it has upon mood.
Clinical Psych has chosen to remain rather anonymous due to the nature of her job and the wish to protect her patient’s privacy.
Name: Health Psych. I prefer to keep anonymous because I am in practice.
Occupation: Psychologist, currently in private practice.
Type of therapy you do: While I have a strong cognitive-behavioural focus, I prefer to mix therapeutic flavours as determined both by the client and the specifics of the situation. I don’t believe that ‘one size fits all’ when it comes to therapy and so take a more eclectic approach.
Blog name and link: Health Psych
Other pertinent information:
As a psychologist, my particular interest is in the relationships between psychology and illness, both in psychological reactions to illness, such as depression and anxiety, but also in the more abnormal illness behaviours, such as hypochondriasis, somatisation and factitious disorder.
I originally became interested in the role of psychology in illness following my own experience with chronic illness (autoimmune diseases).
My responses to the questions below represent my personal views and experience and should not be interpreted as personal advice. If you are currently experiencing distress, please consult your primary healthcare physician or a mental health professional as soon as possible.
1. What sorts of psychological challenges do you think a person suffering from a lifelong chronic illness most often has to overcome?
Coping with a chronic illness can represent a considerable challenge. Chronic illness is, by its very nature, unpredictable. Even when considering the same conditions, there often appears to be no set pattern. For some, the onset of a chronic illness can be sudden, while others can go through a lengthy period, where symptoms are subtle and getting a diagnosis can be extremely frustrating. From that point, the condition can be progressive or stable, can fluctuate in severity and the longer term consequences faced can either be life-threatening or inconsequential.
It is often the fluctuation of symptoms that can make chronic illness harder to deal with psychologically. Two key elements to living with chronic illness relate to adaptation and acceptance, although note these are both built on the basis of other psychological processes and represent the "˜end-goals’ so to speak, the destination rather than the journey to get to those stages. The problem with chronic illness is that people can achieve adaptation and acceptance to their current level of functioning, when things change again. Symptoms can improve or deteriorate, requiring further adjustment. You might think that an improvement wouldn’t involve any significant psychological stress but this isn’t necessarily so: it still can require adjustment and this adjustment can be compromised by concern about how long the improvement may last. People often relate living to a chronic illness to riding a roller coaster and I think that’s a good analogy.
So, the variability and unpredictability of chronic illness demands continual adaptation. Chronic illness often forces us to revise the way we see ourselves. That’s not to say that we should become defined by our chronic illness but such a condition does, by its nature, undoubtedly change things, although the degree to which it does so varies. Chronic illness may change what we are able to do currently, what we were planning to do in the future. Therefore, one of the biggest challenges an individual with a chronic illness may face is the need to revisit their own expectations.
Part of the adaptation process means accepting any new limitations. The people that seem to cope better with long-term illness are those that are able to make this self-revision, who focus not on what they can no longer do but what they can do and who find themselves new goals in life. In illness, people (and it’s often those unaffected by illness) tout the need for a "˜fighting spirit’, to get on regardless, to not let your illness stop you from doing whatever you want. I understand that mentality. In a society where self-value is largely defined by what we achieve, most of us want to do the best we can, to make the most of our lives. However, I think the "˜fighting spirit’ can in fact be damaging, unless it is couched in reality.
The "˜fighting spirit’, when tempered by reality, doesn’t necessarily mean abandoning goals completely. It may mean revising them so that the pathway to achieving them is slightly different. Perhaps we need to break the bigger goals down into smaller, more achievable sub-goals, so our path to the end goal may take longer, may be more complex, but the end goal remains manageable. The destination may remain the same, the journey may be different.
Having a realistic sense of what we can achieve, even if it requires effort, is healthy, striving for the impossible can lead to a sense of hopelessness when we fail to meet the goal. So, a fighting spirit grounded in reality serves us well. Change our sense of purpose or direction in life doesn’t make it worth any less, it just makes it different. In fact, we might often discover a new path offers us more rewards than we could ever have anticipated.
How many times have any of us wished our illness away? Wouldn’t it be great if that wish could come true? Such wishes are an integral part of the grieving process. It’s important to remember that grief doesn’t only relate to bereavement. People can experience grief around any kind of loss: a change in circumstances, a change in who we perceive ourselves to be, the end of a relationship, even for things they never had. Grief can involve denial, a protective buffer that gives you the psychological space from things you aren’t quite ready to deal with; anger and anxiety, which can be directed both inwards towards the self and outwards towards others; bargaining, which represents attempts to regain control of the situation (“if only…”); depression, characterised by sorrow and hopelessness, and acceptance, which is where we all hope to end up. Acceptance means having completed grieving for the part of life that has changed and letting it go to move forward. It means accepting and liking who you are now, with your illness and whatever limitations it brings.
Acknowledgement of the emotional cost
Some chronic illnesses can be notoriously hard to diagnose. Where this occurs, people are often sent to psychologists to determine whether there is a psychological overlay. Even with diagnosed conditions, psychological assessment may be recommended. In both situations, people can often be resistant to psychological interventions. They may think that this means the doctor is dismissive of their illness, that the doctor thinks it is "˜all in their head’. That’s really unfortunate when that happens and often reflects the lack of skill of the doctor in both making and explaining the referral to the patient.
It is well-documented that there is a significant prevalence of psychological disorders in chronic illness. When you consider what’s required in coping with the symptoms and the treatment regimens related to illness, the ongoing process of adaptation and acceptance of illness, it’s hardly surprising. Psychological disorders aside, the experience of chronic illness can also be associated with the experience of emotions such as anger, self-pity and guilt. It’s important to be able to acknowledge the emotional cost of illness. Most people with chronic illness will experience emotional issues at some stage and getting help, in whatever form suits best, represents strength, not weakness.
2. In your experience, what impact does having a chronic illness have upon a person’s primary relationships?
Of course, having a chronic illness can impact on those around us in many ways. In a practical sense, we can find ourselves more dependent on people, we can find the nature of the relationship we have changes because of limitations placed on us by our illness. Other people can react in different ways to our illness. Unfortunately, some people find illness hard to deal with. They may feel awkward, unsure of what to say or do, feel uncomfortable around illness and end up withdrawing from us.
However, I think a lot of the impact on primary relationships results from our emotional processing of our illness. The way we think about and react to our illness is our own responsibility. Common emotions include fear, anger (which I talk about later in a later section), self-pity and guilt.
Fear is a very powerful emotion and can lead us to emotionally shut down from others. When diagnosed with a chronic illness, it’s hard not to worry about the potential consequences of the illness. We want to make sense of it. How will it affect our body? How will our relationships change? Will others perceive us differently? Pondering such questions, to which there are often no easy answers, can increase a sense of isolation, threat and helplessness. We may withdraw. From the viewpoint of others, people may not understand what’s going on for us and misinterpret our responses and so it’s important to communicate our fears with others.
Self-pity is such a negative sounding concept and is an emotion we’re often loathe to acknowledge in ourselves. Yet I believe most of us who lives with chronic illness experience it from time to time. In the short-term, self-pity can make us feel better, it can be comforting. It can attract sympathy from others. The flipside is that longer term, it can be destructive. When self-pity becomes entrenched, relationships can tend to become one-sided rather than reciprocal. When a relationship seems to be all about "˜me’, other parties can feel neglected and walk away.
Again, I don’t see any real problem with self-pity in the short-term. For example, sometimes, when I’m having a run of health problems and I feel frustrated, I will indulge in what I later label a "˜pity day’. I may choose to withdraw, I may feel miserable, I may have a day of doing nothing. However, I tend to recognise this scenario for what it is and limit it to one day. I find doing this, and not pushing on regardless, allows me to recharge and then I’m good to go again. Having said that, if this were to go on for an extended period or happen too frequently, this would signal to me that there might be issues I need to address.
3. How can one emotionally cope with the loss of abilities due to a disease such as Multiple Sclerosis?
I think this is largely covered in response to question 1. It’s about adaptation and acceptance. Easy to say, harder to achieve, but to really be emotionally on top of your illness, these are the two things we really want to be able to accomplish. To reiterate, it’s about looking for new challenges, focusing on what is still available to us by perhaps being flexible in our approach, rather than dwelling what can no longer be achieved.
It can be a long and complicated process. Chronic illness can always be counted to throw a spanner in the works from time to time but the important thing is that, if you feel you’ve experienced a setback, you remind yourself of the progress you’ve made so far and get back on track. More importantly, if you find yourself experiencing trouble with that, it’s important to reach out and ask for help.
The physical cost of an illness such as Multiple Sclerosis is bad enough, there is no need to struggle additionally with emotional issues.
4. How does one best deal with the anger quite often present after one is told that they have a chronic illness?
Anger is a funny thing. People always get defensive when I talk about anger and its management. It’s important to remember that anger sits anywhere on a continuum from mild irritation to the full-on "˜Jack Nicholson axe wielding’ rage. Anger is actually a normal, healthy emotion. It allows the dispersion of unpleasant feelings. Anger only becomes unhealthy when it is expressed incorrectly, when it is explosive and uncontrolled, or, alternatively, when it is suppressed, which can lead to health issues.
In response to illness, anger often represents a sense of feeling helpless and of being out of control. Life has suddenly changed. What we once knew for sure may have changed forever. Nothing seems as before. The anger expressed at this time mostly results from a sense of fear. What will our lives be from this point forward? While illness may be the source of our anger, anger can be turned inwards at ourselves but usually will be expressed towards others, the most vulnerable targets of which might be those closest to us. We might worry, for example, about how our relationships with those important to us will change? Will we lose friends, partners? When this happens, anger fulfils a self-protective, but also counterproductive role: to hurt others before they hurt us.
With time, anger can also result from a craving for attention from others. Illness can make us feel different, may make us feel isolated and powerless, with a resultant need to feel we can still exert influence on others, even if our way of doing so is rather destructive. In illness, anger can also often come from the experience of fatigue or when feeling more unwell than usual.
It is important to learn to manage our anger. For one thing, it is an additional stressor that we really don’t need. Also, anger can affect our communication with others. People tend to switch off when anger is expressed, they don’t want to hear what you’re saying, they become defensive.
Anger rarely comes from nowhere. It’s important to learn to recognise early symptoms and trigger situations. If you find yourself prone to anger, learn some management strategies and implement them early to improve their effectiveness. Strategies can include slow breathing, distraction and good use of timeout. This can give you space to cool down and look at the situation more objectively. I also find it useful to tell those around me when I am getting irritable so that they don’t personalise my anger.
5. How can a parent who has MS best tell their children that they have MS?
Some people might think that it’s better not to burden their children with their illness. However, talking to children about parental illness is important. Children can be very perceptive and can usually sense when something isn’t right. If you’re not open with them, they can construct all kinds of explanations for what is going on and may become stressed and anxious as a result.
Having said that, it’s really important to take into account the age of the children and what you think they can cope with. Younger children will obviously have less comprehension of the longer term effects, older children can obviously reason out possible implications themselves. There’s no "˜one size fits all’ approach. Even for children of the same age, individual levels of comprehension can vary considerably. When talking to your child, be guided by your gut instinct as to what they can realistically handle.
When talking to your child, set aside a decent amount of time, prevent distractions. Be prepared to have repeated sessions. It’s important not to inundate the child with information. Younger children might also need to have information repeated to them on multiple occasions. Be prepared for questions and be honest in your answers. If you don’t have an answer, say so. Listen to their fears and concerns and allay where possible. Reinforce the fact that they’ll continue to be loved and taken care of.
One thing to be alert for is that children may often attribute blame for the illness to themselves. Make sure they know they haven’t done anything to cause the problem.
Once you’ve talked to them about your illness, be sure to monitor their behaviour - changes may signify that you need to take time to talk to them about what they are thinking or feeling.
6. How can an MS patient differentiate between normal grief over being diagnosed with MS and having clinical depression?
The truth is that it can be hard to determine where illness symptoms stop and psychological symptoms start and vice versa. Many illnesses have symptoms that are also associated with depression or anxiety, for example, fatigue, and so these conditions can be falsely diagnosed. Additionally, the same symptoms that actually represent a depressive process can be falsely attributed to the disease.
It’s important to educate yourself on the symptoms of your illness, possible side effects of your medications and, if you feel you may be experiencing a psychological disorder, the symptoms of depression and anxiety. That said, I think what is key is that when symptoms experienced are becoming more severe, when they are disrupting your normal life activities (beyond any limitations imposed by your illness), when such symptoms are lasting more than two weeks, it’s time to seek professional help. Talk initially to your health care provider so that they can assess your medical condition and possible drug side effects and then refer you on to a psychologist or other mental health professional if necessary.
7. Are there any specific medications which best help the depression as a symptom of Multiple Sclerosis?
Psychologists in Australia are not licensed to prescribe medication. In my opinion, this is a question best addressed by the specialist responsible for the management of the multiple sclerosis in conjunction with a psychiatrist, both of whom have the specific medical background necessary to make such a recommendation.
8. Do you have any suggestions for MS patients who also suffer from anxiety and/or panic attacks related having this disease?
Anxiety often stems from a fear of what is unknown to us. For some people, it can be helpful to understand what we are up against, not only physically but cognitively and emotionally. Having an understanding of how the illness affects us and how we react to it makes it easier to cope longer term. Saying that the illness makes us feel bad is only half the story, we need to understand what it is about the illness that makes us feel that way and to recognise any reaction to that feeling.
However, I specifically say for some people because people differ in the amount of information they like to know about their condition. It’s important to match up the level of information provided/obtained with individual preferences. For someone who prefers not to know much about their condition, too much information can be overwhelming. Similarly, for someone who wants to know as much as they can but is given/can obtain little information, it can be equally distressing.
There are strategies for reducing anxiety. These can include learning relaxation techniques, physical exercise (obviously in an appropriate manner and at an appropriate level), distraction exercises, and the use of coping statements and so on. Some people experiencing high anxiety may find medication beneficial and should discuss this with their primary care giver.
Where people are experiencing full-on panic attacks, I would advise seeking professional help. Panic attacks can be overcome but I believe this is difficult to do on a self-help basis.
9. Any advice on how to cope with the cognitive effects of MS including memory loss and difficulty processing information?
Two things I’d probably stress here. The first relates to self-care. Try not to overload yourself. We all face many competing demands. It’s important to weigh up the advantages versus the costs of any activity and choose wisely. Break things down into smaller, achievable units. If you’re still finding things a challenge, ask for help. Concentrate on one thing at a time; multi-tasking is over-rated It’s all about attention, attention, attention.
If you’re trying to learn new information, choose a method that’s appropriate for you. For example, I find it easier to assimilate new material through listening rather than through reading, so I opt for audio-visual materials where possible.
Try to isolate the key ideas and gloss over the detail. Sometimes it can be useful to summarise the main points either in writing or to someone else to reinforce your understanding. Chain the new information to things you already know - making a link in this way can help considerably.
Then there are the practical tips for coping with memory loss. It can be useful to organise information to facilitate recall of important things: use diaries, make lists, harness technology, such as using alarms on mobile phones. So great is the information overload these days, I’m not sure how anyone gets by without getting organised in this way.
10. Last thoughts?
Be social Having a chronic illness can lead to a sense of isolation. Even if you have people around you, a sense of isolation can develop if you don’t have anyone who really understands what you are going through. Often, people can back off because they feel uncomfortable with illness, they fear saying the wrong thing. Illness can also make us feel different, we might think that no one can possibly understand what we’re going through, we might tire of having to explain what our illness means to us. In the end, it can all seem too troublesome and seem easier to be alone.
However, I can’t stress the importance of the support in whatever form that may take: family, friends or a group of people coping with the same condition. Many people struggle to accept help and would prefer to be the helping end of the equation. It can be hard to make the mind-shift and ask for or accept help. However, as trite as it sounds, just as we like to help, we need to remember others also like to help and in accepting help offered to us, we are giving others a gift.
Be prepared to get help If you feel you are struggling with your illness beyond what your immediate resources can help you with, get professional help. Shop around, find someone you feel comfortable with, find someone who gets what you are going through. Be open to the emotional component of your illness.
Fisher, G. C. (1997). Chronic Fatigue Syndrome. New York: Warner Books
Memory tips Cancer Institute of NSW
Talking to children about illness from the Marie Curie organisation (UK)