People living with multiple sclerosis (MS) live under the stress of trying to not live under stress. MS patients are told to avoid stress at nearly any cost. Even above avoiding high outside temperatures, stress avoidance is the piece of advice given most to MS patients.
We are asked to simplify our lives and to remove anything, or sometimes anyone, that does not induce peace or calm. Like all bits of advice, it’s easier said than done. When telling people living with MS to relax more or to avoid stress, it is important to do more than say the words. It starts with gaining a better understanding of stress.
Healthcare providers working with MS patients know that reducing stress is paramount. One way of doing that is to learn more about what it is, but the literature is scant. The subjective nature of stress is a major reason why so little MS research has tackled this topic.
For the average MS patient, stress is defined as anything you just cannot deal with. As a noun, it can be a person, place, or thing. As a verb, it can be an activity or a state of being. Both views rely on the perception of the person feeling the stress who in turn is affected by many other influences.
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The serious role that stress plays in the health and wellness of people living with MS should not be understated. Independent research and systematic literature reviews have shown that exacerbations may be triggered or made worse by stress. Each person has their own particular triggers, so what is stressful for one MS patient could be a cakewalk for another.
I believe that it is a high level of stress that keeps all of my MS symptoms in a constant state of play. Every day is a cacophony of pains and twitches and aches and oddities. And every day I have a “to-do” list that feels as long as Santa’s, just with a lump of coal at the end. I know people who enjoy stress. For some, the rush of blood from an increased heartbeat makes them feel more alive. Others relish stress in the knowledge it means they are needed and kept busy.
I do not wear my state of panic as a badge of honor. For me, there is nothing good about feeling overwhelmed, especially because I know it is bad for my MS. However, it would be worse for me but for the help of my healthcare team, especially Anastacia, my neurologist’s physician’s assistant.
Anastacia has played an essential role in my MS care by being attuned to me beyond mere symptoms. I am consistently asked about my stressors and environment. Anastacia keeps tabs on my answers as one way of monitoring my MS. Most importantly, she has provided me with ideas to reduce stress and recommended ways in which I could take advantage of available tools, such as meditation and intentional breathing. She fully grasps the idea that controlling my stress can do nothing but good for my MS symptoms. Anastacia sees this as part of MS healthcare and acts accordingly.
When a person living with MS presents themselves to their HCP for assistance, they bring everything with them. Stress is not an issue that is disconnected from MS care. Treating an MS patient for symptoms and lesions alone is giving short shrift to the entire person and disease. This is a chronic illness where avoiding stress can have a significantly positive effect on the MS patient’s quality of life and help reduce exacerbations.
When the next appointment comes around, the prudent thing to do is have a discussion around stress and how it is affecting your patient. Then find a way to work as a team to find solutions.