Are You a Doctor?!
For too many years after I was first diagnosed with possible (yes, possible) multiple sclerosis, I was emphatically told numerous times that stress did not cause an exacerbation.
Other than the impact stress has on our general health over time, I was led to believe stress had absolutely no impact on MS. This opinion has changed.
In the June 24, 2014, NMSS on-line publication regarding a “Joint Medical Meeting (CMSC/ACTRIMS),” is an article, Mind Over MS, by Carrie L. Sammarco and colleagues at NYU Langone Medical Center in New York. It “reported very early results from The Mindfulness in MS program, a weekly program designed to reduce stress and enhance quality of life in 10 people with MS through mindfulness-based techniques, such as body awareness, breathing, progressive relaxation, meditation, visualization, and hypnosis.”
Finally some recognition of the potential for stress to negatively impact the progression of multiple sclerosis! Is this a “duh” moment?
The Lab Rat Roared
It has been demonstrated to me over and over and over for years that some medical professionals (MPs) are bad at listening and have a tendency to view their MS patients as little more than lab rats. We who suffer the impacts of MS absolutely know our bodies better than anyone else. More often than not, we are surprisingly capable of making a correct albeit sheepish determination about a symptom’s possible cause: especially when there is a strong potential for it being caused by MS.
This is not to say we are always right, but my anecdotal evidence has proven this to be true more often than not.
Who has not heard a neurologist or other MP say something akin to “you know, not everything is caused by MS:” A not-so-subtle admonition and dismissal after you just told the MP you believe it is MS related. These are the highly educated medical “Board Certified” professionals and you are just the patient. Therefore, what a patient suggests as a cause is obviously flawed. The mocking disdain and dismissive attitude is more common than most people would like to believe. We ‘laypeople’ “are not sufficiently trained to make a credible suggestion about a possible cause of a medical concern.”
However, so little was and is known about the disease that the MPs — in what amounts to a waste of time and money — treat the pain in your big toe for some cause/malady other than MS. The next thing you know, you have gone through a couple of weeks and two hypodermic injections into your big toe to treat gout. The MP’s justification? “We have to rule out the other possibilities.” (An actual example situation.) Could not they first rule out MS as the cause? No. (Refer to the 10 words in this paragraph.)
Consequently, we generally accept the therapy an MP prescribes: even when it might do absolutely nothing to relieve or eliminate the symptom. However the symptom gradually subsides. – hmmm . . . perhaps it is MS?
Just Get Out
So, back to the stress topic . . . A tenet of the 70/Four70 MS Men’s Group is the belief in the need to maintain social contact. i.e. To regularly get out of the house to be with other people. Specifically, we believe that men with MS need to get and benefit from getting together with other men with MS.
Per the Betty Hardwick Center, “. . . humans are inherently social beings. Socialization, or enjoying other people’s company and maintaining a sense of connectedness to others, is an important component of stress reduction.” As a small group of men, this benefit is even more likely.
The Betty Hardwick Center article continues: “. . . quality, rather than quantity counts when it comes to interpersonal relationships. In other words, surrounding yourself with a large number of people who you don’t know very well is less effective than having 2 or 3 close confidants when it comes to successfully reducing stress.” Providing an environment of confidentiality, understanding, and frank discussion fosters the benefit.
Regularly meeting with other men with MS encourages the development of trust. Plus, a man sometimes feels more comfortable discussing some symptoms and issues with another man with MS before discussing it with a medical professional or even a member of his family. Describing a symptom to a medical professional is understandably met by a clinician’s viewpoint rather than a true understanding. Moreover, when describing a symptom to a family member or friend it is common to be met with the response “oh, I have that sometimes” when, in fact, they have never had what you are trying to describe. To complicate things, you also cannot find the right words to accurately describe the symptom!
The bottom line: meeting with other men with multiple sclerosis in a comfortable setting is of immeasurable benefit. It is a high priority stress relieving activity and should be an integral component of your healthcare.