Coping with MS and Mental Health

Living with a chronic illness like multiple sclerosis is challenging, not only physically, but mentally as well. For some people, a diagnosis alone is enough to cause considerable mental anguish. Others may get past their diagnosis initially but encounter difficulty later in their life because of the disease. Fear of the unknown, giving up a career or life goals, losing friends, living in pain, fatigue, and even physical changes in our brain, can all have an adverse effect on our mental well being. Depression is a common and serious MS symptom With the list of challenges so considerable, it should be no surprise that depression is an extremely common and serious symptom of MS. There are ways to protect and improve our mental health; however, many people are resistant to them because of social stigmas and myths that surround these methods. One of the most beneficial ways to help your mental health is to see a therapist, so I’d like to dispel some of the myths around that, in hopes of improving your chances of seeing one. Myth: Therapists will just shove more medication at me After talking to a number of other folks with MS, I realized this is one of the biggest concerns/myths regarding going to see a therapist. Many people with MS are already on a number of medications and dread going on one more. Additionally, many people are fearful of the side effects of antidepressants. Some have also had prior negative experiences with such medication (particularly when prescribed by a non-mental health professional). Fact: Therapy does not require medication The truth is, that not all therapists can even prescribe medication. My current therapist is one such person: he is not a medical doctor, he started in social work and later became a licensed counselor. While he did have me consult with a doctor to see if I’d be a good fit for medication, they both determined that I wouldn’t be a good candidate. Therapy does not require medication. While it can be a helpful tool they utilize, it is far from the only solution they can provide. So, the therapist just listens to your problems? Even in the media, there seems to be this stereotype of going to a therapist and talking about your life while they simply sit there and listen. I think many people seem to think that you go to and just get things off your chest and that’s it. The truth is, while my therapist does listen to me talk about my life and what’s weighing on me, it is a much more active experience than that. Coming up with coping strategies and techniques Yes, I explain to him what’s bothering me and how I feel. However, he does much more than listen, he helps me come up with strategies and techniques to handle my issues. While just talking about my issues to someone is helpful, he is also there to teach me new methods of dealing with those issues. In the same way that a physical, occupational, or speech therapist teaches you tactics to move or speak better, a mental health therapist teaches you new ways to think. It’s all about them giving us the tools and techniques to live our lives better. Isn’t therapy all about the past? Another misconception I’ve seen out there is that people think that going to see a therapist is going to involve digging into their whole life and finding some issue from their childhood. While delving into your past can certainly be necessary, most therapy is much more rooted in your current life. I have serious issues about not working anymore, so we deal with that. A good therapist will realize that you are in your current situation because of your illness, and that’s what you need to deal with. Therapy is really more about learning how to move forward, not focusing on the past. Again, real therapy is not what you see on TV. But I’m not “crazy” The social stigmas around therapy and depression often make people think that they need to have a severe mental illness to be in therapy. That can’t be further from the truth. You do not need to have a mental illness to see a therapist. In fact, you don’t even need to be depressed. Plenty of people see therapists simply because they are stressed and feel overwhelmed. Even without the impact of living with a chronic illness, plenty of people see a therapist so they can learn better strategies to cope with their everyday life. Let’s face it, we live in a pretty hectic and stressful time. Learning some tips on dealing with that can be beneficial to anyone. Myth: Therapy is never-ending It seems a lot of people think that if they start seeing a therapist, they’ll be stuck going for a very long time. That’s also a myth. As I’ve mentioned, you are there to learn and work on strategies to deal with your problems/life. Plenty of people benefit from that and then leave. Short-term therapy is actually very common. Again, back to a physical therapy example, once you’ve learned what you need with a PT, you don’t keep seeing them. That applies here as well. In my own example, I went from seeing a therapist once a week, to now going every other month, and that’s really because I choose to do that because I enjoy being able to talk to someone. [native] Logistics of paying for therapy and getting to appointments Another big reason people don’t go to therapy is because they think it’s inconvenient or too expensive. Most insurances will cover a therapist; you simply have to look into your own insurance plan and check. As mental health is being more understood and the stigma lessens, more providers are covering more services. As for inconvenience, trust me, I get it, I don’t drive, so it takes a lot of planning for me to go anywhere. Many therapists will work with your schedule. Additionally, many will now even do sessions via phone or video chat to make it easier for you. Therapy is something where you don’t necessarily need to be physically present in order to benefit. Therapy myths busted I hope I’ve helped clarify some of the myths around seeing a therapist. Mental health is a huge area of concern for those suffering from an illness like multiple sclerosis. Seeing a therapist can be a great way to learn how to keep those issues at bay. Seeing a therapist to improve your mental health is no different than seeing a physical therapist to walk better. Therapy is just one part of a total care solution to your illness and belongs there right next to your neurologist, physical, occupational, and speech therapists. Thanks so much for reading and always feel free to share! Devin My Other Articles On MultipleSclerosis.net - Follow Me On Facebook [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] Throughout Lynn’s journey with MS, we have been fortunate that he has rarely had to deal with any form of mental health impairment. Having primary progressive MS, long ago, he lost his ability to move productively any of his limbs and needs assistance with bowel and bladder functions. However, his mind has always functioned well. He is excellent at Trivial Pursuit games, writes very complex science fiction/fantasy novels for a living, and has more random knowledge about almost any topic related to cooking and building than you could imagine. His MRI shows practically no impact from MS in the memory centers of the brain. All his brain networks are sparking along just great, that is, they were until suddenly in April, they weren't anymore. Sundowners Syndrome In late April, Lynn began to experience a phenonium called “sundowners.” Each night as it began to get dark, he would take a nap and awaken not knowing where he was. Most of the time, he did not remember me. Often, he believed he was trapped in a dangerous situation and could not escape (explaining why he could not move). He would ask me about family members he thought were present. Other times, he mistook me for a different family member and asked me why I was there and when I was going home. From sundown to sunup, I never knew what to expect when he called me for assistance, and I never knew whether I would be able to re-orient him to the present time. Physical demands of care Over the years, the physical demands on me of dealing with his inability to move various parts of his body caused a lot of aches and pains. Due to the amount of work necessary to keep up with his care, I usually only slept 5-6 hours a night, including at least one 15-30-minute care period per night. However, exhausting that might be, none of that compares to the impact of dealing with someone who repeatedly asks you the same question – the same question- every two minutes for hours. There's no way to tune that sound out and sleep through it. Especially when the question they are asking is one that requires you to deny them a request that upsets them, and they escalate the demand over and over. [native] Case in point One night, Lynn decided he wanted me to untie him from the bed, pull him into the floor off the bed, let him get up on his own and walk down the street. There is a lot wrong with that request. First, he was simply lying in bed on his side; not tied. He had on positioning boots that were heavy and might have felt like bonds. Therefore, I removed the boots and changed his position to see if that might resolve his issue. It didn’t. Second, if I dragged him into the floor as he insisted, he could potentially get hurt by the fall from his bed to the floor and getting him back up would be difficult. He didn’t care. He said that would not be a problem anyway. Third, he cannot walk. He has not been able to walk since 2010. He insisted I was wrong, however. “All I need to do is get out of bed,” he declared, "I'll show you. Just do it.” No amount of persuasion or reasoning with him would correct his belief that he could walk. He persisted in his insistence until he fell asleep trying every trick, he could try to get me to pull him out of bed into the floor. Note: It did not work. I did not pull him into the floor. His reality Fortunately, we discovered that Lynn's delirium behavior was due to underlying pneumonia that developed into sepsis. Though both those medical conditions are dangerous, I was very relieved that they were the cause of the behavioral developments because I wasn't sure how I was going to deal with the mental health behavior if it were to continue long term. How to deal with sundowning: lessons I learned My short exposure into the world of mental health caregiving gave me a deep appreciation for those who must live in that world full time. The struggles are more exhaustive than the physical challenges of the type of care I provide daily for a person with quadriplegia. Here's some of what I learned. It's real to them Everything the individual tells you they see and hear is absolutely real to them. When you respond to what they say to you, that response needs to reflect their concern for that real situation and make them feel safe in that situation. I know the mental health professionals say you shouldn't play along with the delusions but at that moment, to keep everyone calm, you have to treat the scene as real because it’s real to them. They may not believe you If the person thinks they are in a particular location and you tell them they are not, they won't believe you unless you prove it to them. If you show the person their current location, you have a better chance of getting them to understand. I took pictures where Lynn could see me take them, and he made his comparisons. Then, he was able to see he was actually on dry land and not at sea, for instance. Don't argue with them Don’t argue with them. You cannot win an argument with an irrational person. Walk away. This point was the hardest one for me, and I admit I didn't do very well with it. I wanted him to understand my position, and I would try to make him “get it.” He didn’t because he couldn’t. When you feel your anger start to grow, walk away till you’re calm and can deal with it all again because you cannot resolve these situations with an argument. Check in with yourself You don't think clearly or behave at your best when you're tired and sleepy. You're, therefore, probably not handling this situation well because you're probably tired and sleepy from being up the night before. Check yourself if you are in a position anywhere and it's not going great to see if maybe it's not going great because of you. Lucky for us both, Lynn is now back to normal. His pneumonia is gone (took two months and three hospitalizations) and so are all of his mental health issues. My glimpse into the world of mental health caregiving truly gave me a profound respect for each of you who rise to meet the challenges every day. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] Many people who have MS experience not only physical symptoms like spasticity, pain, and weakness, but also emotional symptoms like depression and anxiety. Unfortunately there is a stigma associated with mental health in general, which can make it even more challenging for people to seek treatment. So I wanted to share my personal story in hopes that it may help others in the MS community. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"],Following my MS diagnosis six years ago, I experienced the usual range of emotions: sadness and feelings of loss. Who wouldn’t feel depressed by this news? Sadness and grief aren’t only normal reactions to an MS diagnosis. Full-blown depression is, itself, a biological symptom of MS as well as a secondary condition (also called a comorbidity).1 Is depression a result of MS? I’d been diagnosed with nonseasonal depression years before. It’s impossible to know if it was secondary to MS or its own standalone condition. For me, it matters less than knowing I’ve successfully treated my depression, whatever the cause. So, I read with interest recently about new research that suggests a relationship between MS and depression may be the product of disrupted circadian rhythms, which can influence nighttime sleep patterns and daytime fatigue. [native] What are circadian rhythms? If you’ve ever heard of the “body clock,” then you recognize circadian rhythms at their most basic. All living things tune their sleep-wake (and other) rhythms to the light-dark cycles of the planet. Human rhythms allow for a 24-hour day that includes an 8-hour rest (sleep) period and a 16-hour active (wake) period. These rhythms are managed by a main circadian clock called the suprachiasmatic nucleus (SCN), an organ found deep in the brain. All other systems in the body—and all of our individual cells—have their own clocks, as well. They synchronize with the SCN. Our circadian rhythms help us to maintain overall health. However, when disrupted, different kinds of physical, emotional, and mental imbalances—all which live at the core of chronic illness—may develop. What’s circadian disruption? When our environment and/or behaviors interrupt the natural ebb and flow of our circadian rhythms, we can fall into something scientists call desynchrony. That is, our rhythms have become disrupted. Reasons for desynchrony could include:2 Not keeping a regular sleep schedule (going to bed and rising the next day at around the same time) Too much light exposure at night Eating large meals too late at night Medication side effects (for instance, prednisone can cause insomnia) Pain, which can interfere with sleep and cause daytime fatigue Untreated anxiety or depression, affecting daytime energy and nighttime sleep, regardless of season How do circadian rhythms affect sleep and wakefulness? The circadian system is fairly complex; suffice it to say that it takes cues from our environment (light exposure, meal times, and activity) to determine when we’re awake and when we should be sleeping. A sophisticated chain of neurochemical events inspired by these cues are what lead us to drowsiness and, eventually, nighttime sleep. A second series of events help us to awaken in the morning. Chief among these cues is light exposure. Think about it: It’s hard to get good sleep at night in a well-lit space. But it’s also difficult to feel energetic during the day if we don’t experience exposure to light (especially natural light). The link between depression and circadian disruption The study I ran across focused on the relationships between circadian disruption (desynchrony), MS and depression.3 The researchers used questionnaires, data from wearable activity monitors and sleep diaries to determine whether 60 people with MS could be categorized “at risk” or “not at risk” for developing depression. Almost two-thirds of subjects reported poor sleep, and over half reported substantial fatigue. Over half were considered “at risk” for depression. Most significant was the association they found between fatigue—MS’s most common symptom—and depression. In fact, the odds of having depression were twice as high for those who exhibited circadian disruption, nearly twice as high for those with poor sleep and almost five times higher for those with fatigue. The researchers confirmed a meaningful link between circadian disruption, poor sleep, fatigue and the development of depression in people with MS. It’s not a stretch. Problems with MS can interfere with sleep-wake cycles, leading to behavior changes during the day. These might include less physical activity and fewer opportunities for quality light exposure. Both deficits are known to undercut one’s mood.4,5 What I take away from this research It makes sense from personal experience. I live in the Puget Sound. Rainy days blended with daytime fatigue and other MS symptoms (pain, digestive problems, cognitive fog) mean I must force myself to go outside to keep my rhythms synchronized. No doubt my “low mood” days are part of the outcome of disrupted rhythms. It’s why I swear by my “happy light,” even in summer: it delivers a much-needed energy and vitamin D boost which improves both my mood and motivation. How do you fend off depression while living with MS? [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"]

Coping with MS and Mental Health

Mental Health & Chronic Illness: Therapy Myths

Caregiver Perspective: Mental Health Caregiving

The Reality of Depression, Anxiety, and Emotional Symptoms of MS

Depression in MS: The Circadian Connection

Taking a Break from Stressing Out Can Be Stressful

What Is Mental Health?

Let's Address The Elephant in the Room-Depression and MS

Mood Swings

Stress/Anxiety & MS

Support: Look and You Shall Find