Mental health is a topic that comes up repeatedly in our group discussions. We often find ourselves expressing frustration at the lack of attention paid to the mental health symptoms of MS, especially from our doctors. The relationship between MS and potential cognitive and psychological disfunction seems obvious to us since MS is a disease that attacks the brain. But most mainstream medical professional focus their attention primarily on the physical and motor control symptoms of MS. There seems to be a general assumption that if we are mobile and ambulatory, we must be fine. As many of us have experienced, we can be appear physically fine and walking around, and still be in the middle of a flare. “Recent research shows fatigue and cognitive impairment as the two main reasons why an employee with multiple sclerosis (MS) has to change their job, reduce hours, or retire early. The implication from the research is that MS affects employment status before physical disabilities even set in (link).
There are still layers of stigma and shame wrapped around mental health and we often experience fear and embarrassment disclosing our cognitive symptoms. This can make it hard to communicate or even realize that cognitive symptoms are occurring. MS is equivalent to a traumatic brain injury, and it comes with the same set of potential behavioral and psychological symptoms. Symptoms can often be mis-interpreted as personality flaws – flaky, grumpy, forgetful, lazy, whiney, ill-tempered. These un-identified and un-treated symptoms can interfere with our ability to work, maintain healthy relationships, and access appropriate medical care.
In this group, we have all experienced caregivers, doctors, and family members attributing our symptoms to malingering and hypochondria. MS is a disease that doesn’t get diagnosed until an obvious medical crisis is occurring and subtle early-warning symptoms are often sub-clinical and un-recognized.
This is why this topic comes up so often. We are all reaching for better tools, and just being able to talk about our experience with people who understand and relate has helped all of us release shame about our symptoms and reach out for better support.
Almost 100% of ms folks experience depression. Not just because being sick is depressing, but because ms actually causes depression neurologically. Antidepressants can help. Counseling helps a lot. Psychiatric care can be a key resource in appropriate care of MS – it is important to have professional help in discerning between self and disease. A healthy diet and regular exercise always helps. Exercise can become a challenge when depression removes one’s enthusiasm and momentum for life, so getting that exercise in any accessible way we can find, even if it’s just silly dancing in our living rooms, is critical.
In our discussions, several people shared their experiences of a “Fight or Flight” depression, where significant cognitive functions seemed to shut down and one’s ability to make meaningful decisions seemed to evaporate.
Cognitive Disfunction & Impairment of Executive Planning Skills:
“Cognition refers to a range of high-level brain functions including your ability to learn and remember information, organize, plan and problem-solve, focus, maintain and shift attention, understand and use language, accurately perceive the environment, and perform calculations.
A change in cognitive function or cognitive dysfunction is common in MS — more than half of all people with MS will develop problems with cognition. It may have been your first symptom of MS. Certain functions are more likely to be affected than others (link)“:
- Information processing (dealing with information gathered by the five senses)
- Memory (acquiring, retaining and retrieving new information)
- Attention and concentration (particularly divided attention)
- Executive functions (planning and prioritizing)
- Visuospatial functions (visual perception and constructional abilities)
- Verbal fluency (word-finding)
We may experience an exacerbation or a flare that is almost entirely an attack on our cognitive functioning. Usually in response to stress, it can be as if our executive cognitive abilities just shut down, we loose all sense of planning for the future, and just exist in a panicked now, resulting in significant loss of ability to function. Being able to identify and track a loss of cognitive function can be crucial to getting appropriate support and treatment.
Anxiety & Insomnia:
Anxiety and insomnia are two closely related symptoms that can sneak up on us and be mis-interpreted as personality defects or psychiatric breakdown instead of being recognized as symptoms of a brain under attack. Racing thoughts, elevated heartbeat, adrenal systems on overdrive, can all be physiological symptoms of multiple sclerosis.
Adrenal dis-regulation can result in panic attacks, general anxiety, and insomnia. Sleep deprivation exacerbates all existing psychological and emotional issues and also causes depression. It also makes it harder for the body to heal from small injuries and injury of the ms exacerbation itself. Treating anxiety and insomnia are, perhaps, the most urgent needs when prioritizing a treatment plan and seeking treatment.
Whether as a side affect of chronic depression, anxiety, or insomnia or as another independent symptom of a brain under attack, personality changes can be a very real symptom of MS. Our group members have reported seeing the following changes in themselves and their loved ones with MS:
- becoming more abrupt and impatient
- not doing activities that they used to enjoy
- having more difficulty recognizing/interpreting other’s emotions, not noticing when others are upset
- not realizing when a logistical situation has become un-safe/un-manageable
These personality changes can take a heavy toll on our personal and even our professional relationships, and again point to how important it can be for ms patients to receive ongoing psychiatric care.
Treatment & Support Strategies:
Knowing how to help our friends and loved ones who may be struggling with cognitive and behavioral symptoms of ms can be challenging and discouraging. We often do not want to step in and interfere with other’s lives or interfere with their autonomy and decision making. Fighting the isolation than can arise with these symptoms is sometimes the hardest and the most important work that we as ms patients do in navigating this disease. Below are some of the most helpful
- Psychiatric Care
- Diet and Exercise (soothing the parasympathetic nervous system)
- Antidepressants and other psychiatric pharmaceuticals
- Connecting with Friends, Family, Community
- Mindfullness, Qi Gong (soothing the parasympathetic nervous system)
- Massage & Bodywork (soothing the parasympathetic nervous system)
- Rest & relaxation (soothing the parasympathetic nervous system)
- Time in nature (soothing the parasympathetic nervous system)
- Anything that supports a full, 8hrs sleep
- Assistance in navigating insurance and healthcare bureaucracy and/or accessing disability support
- Attend an MS support group near you to receive empathy and support from others who know what you are going through