Chronicles of Life with Multiple Sclerosis
After reading some other posts on tumblr that deal with this issue I started word vomiting a bit since this is an issue I’m extremely passionate about. Please bear with me through this rant. I really do feel its incredibly important.
Its a troubling norm that symptoms are assumed to be only psychological or physical. I don’t believe in the generally assumed mind body separation. Its all connected and physical symptoms lead to psychological issues and vice versa. I think its a disservice to so many of us dealing with new diagnoses (and old ones!) trying to understand how this does, did, and will effect us to place our experiences in boxes that you decide are valid or invalid to you as a doctor. We are often told its ‘just a mental health issue’, as though those issues are invalid, and non medical, and what we feel happening to our own bodies is thus only in our imagination. Then to hear from a mental health professional that it ‘sounds like a medical issue that your neurologist/gp etc should deal with’. The attitude that these things are too complex for communication between health professionals is insulting.
I still deal with this today, despite multiple bouts of optic neuritis, some scary looking MRIs, extreme fatigue on a daily basis, losing feeling in a leg here and there, and experiencing muscle twitches that, though lucky for me they are not the most obvious, leave me unbalanced and afraid to go out for fear that I will seem strange or get labeled some sort of drug addict. Excuse the run on sentences but my strong response has me ignoring grammatical correctness. As a patient, I would appreciate a less flippant reply from doctors than ‘well maybe your mood is making this happen’ said with a tone that implies old school ideas of crazy, insane, or women’s hysteria. Depression and Anxiety are medical issues themselves and should be treated as such. When you diagnosis me with a chronic illness, one that has likely been progressing for years, you cannot continue to ignore the impact of those progressing issues, and those past years, on my well-being both mentally AND physically. If my anxiety seems to be an issue, I ask you to deal with strange symptoms for years, followed by a serious diagnosis like MS (that helps you understand some past experiences and scares the crap out of you at the same time) and then watch your health continue to decline while learning to deal with treatment options that alter your life like daily injections. Add to that attempting to understand your symptoms by reading online since the doctor is less than receptive, implies you’re ‘just’ dealing with anxiety and depression, and resents any education you might have that has you asking questions about research or saying anything other than ‘oh yes doctor what do I do?’. If that’s not a reasonable anxiety inducer then why not add to that the financial burden that a diagnosis like MS or any other chronic illness has on you, add health care issues (especially in the US), those dreams and hopes that you are forced to alter due to the diagnosis… Is that sufficient for you? I think a steady dose of anxiety and depression is pretty much unavoidable. Moreover, the ‘preexisting’ mental health issues seem to continuously serve as an excuse for doctors to ignore health complaints in a way that leaves many of us diagnosed much later than we should be. Its wrong and its, in my opinion, a very serious problem that should be considered malpractice.
From a different perspective, as a social scientist rather than a patient, I consistently see the way that academic fields are used to divide us. Academics still thrive, especially in the hard sciences, on Descartes ‘Dualism’ in its most superficial extrapolation (I could go on here but I’ll save it for another entry someday heh). Those of us working in the social sciences tend to see this in action more often than not, though academia will claim to be trending away from this. The truth is, despite claims of trending towards holistic views, we most definitely haven’t gotten there. Neurologists, psychologists, psychiatrists, general practitioners, all have little communication with each other as fields, and in many cases as practitioners. I implore those in mental health fields, medical services (be it doctors nurses etc), social scientists, and biological science researchers, to stop and think about this separation they are making and how it impacts their patients. I’m compelled to call on several studies that have shown the correlation between adverse childhood experiences, amounts of stress during childhood, and diagnoses of autoimmune disorders later in life. The connection is strong. The direction of stress research in general these days has shown strong correlations between the social and emotional realities of life and rates of morbidity. Social epidemiology has provided us with a wealth of research that identifies the connection between the social/cultural/physical world and health outcomes. Its undeniable! When we we get our heads out of our collective bums and start looking around? Physical and mental health are connected. I’m unsure how much more research there needs to be for health fields to stop existing in an esoteric, egotistical vacuum and start working together and taking each other seriously. More importantly how much more research it will take for them to take seriously the people they have pledged to serve! (one example of research on childhood stress & autoimmune disorders http://www.psychosomaticmedicine.org/content/71/2/243.abstract)
As a patient AND a researcher, I beg of you practitioners out there: take your patients more seriously! Do not divide their complaints between the physical and mental and assume you only have to acknowledge one or the other. Do not discount a physical issue because someone has experienced a mental health issue in the past. Please stop and realize what we have all been living with to get to a point at which we seek medical help and what your diagnosis means for our future. Please acknowledge how that diagnosis alone will impact our well being physically and mentally. Review the emerging research on the connection between the physical environment, stress, life events, mental health, and physical health outcomes. I can only speak for myself, but I find it unimaginable that doctors can separate mental health when dealing with diagnoses of chronic illnesses of any sort. The psychological is intertwined with the physical in an inseparable way. Please lets start to acknowledge this and start listening to each other, patients and practitioners alike.
If you aren’t thinking about un-following or throwing eggs at me, thanks for reading. I’ll get off my soap box now. I welcome any comments, experiences, really anything you’d like to share in response.