Can we please move beyond this mind body seperation?
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.
A small, 14-step guide to being a good friend to a chronically ill individual: feel free to send me or reblog more suggestions.
There are heaps of articles on how to cope as an individual living with the illness, but what about our friends and family?
**And since I’ve received some not so kind messages about this: this is not necessarily how everyone feels…and I am not asserting that, so…if you don’t agree, there’s no reason to bash someone (you know, me) for having different opinions.
I’m not broken, so don’t treat me like I am. I may not be able to join you all the time, but that doesn’t mean you should or have to stop inviting me to hang out. I can leave my house. On good days I can do just as much as you can. Having a chronic illness is isolating as is, but please do not make that isolation worse. It’s extremely insulting, hurtful, and infuriating when I realize you have completely stopped texting/calling/inviting me out like you used to because you assume I cannot do things or because I do things slowly/differently.
Don’t come and go. Either choose to be present in my life, or leave. I have lost too much already and I face constant inconsistency in all aspects of my life. The progression and symptoms of my disease change, flares come unexpectedly, good days come unknowingly— very little is constant. I do not need friends who treat me like I do not exist a good 90% of the time and decide to drop in and out of my life sparingly. I depend on your support more than you might think, especially during hard times. I hesitate to accept your support because so many others have walked into my life and left when I got sick and secretly needed them more than ever, so either stay or go, but if you’re going to call yourself a friend, be there.
Your visits and efforts are often the brightest part of my day, if not entire week. When I am home on the couch, I usually don’t have the ability or energy to entertain. Bring a movie or a game, a craft or project, but please don’t come to sit on my couch and complain about how bored you are.
Be flexible and try to have some patience with me. When I make plans, I make them with the intent of keeping them, but there are days where I will wake and I am simply too tired or sick to keep those plans. It is not me ditching you and I do not enjoy having to break plans, I just don’t know how I will feel one day to the next. If it happens, help me to come up with an alternative that works for both of us?
People with chronic illness are so often forgotten about or friends forget that the illness exists because we cease to complain/talk about it. I don’t talk about it because I don’t want to be a burden or focus on the negative, but that does not mean it goes away or does not bother me. It means a lot when someone asks me how I am and wants an answer. Please remember the meaning of chronic, and if you do not understand, ask questions.
Before you give me unsolicited advice, think about what you’re going to say. If healing crystals, exercise, or a special diet could cure me, I would already be cured. Please don’t tell me either directly or indirectly that I caused my autoimmune diseases. It’s just plain insulting and it was hard enough to find a physician who looked hard enough into my symptoms rather than diagnosing me a hypochondriac— I do not need friends or family asserting the same.
You can laugh about my illness. I do all the time. If I find something offensive, I’ll let you know, but more often than not I find humor to be as good a medicine as my pain killers.
Speaking of pain killers, please don’t assume I have an addiction because I use them for pain. I am not addicted. Do not steal them or ask for them to get high either.
If we go out and you drive, please park close to our destination. A simple act that goes a long way.
Make the effort. I won’t ask for anything nor do I expect anything, but little things here and there go a long way to helping me cope with day to day life. Bringing something by for us to do, offering to bring something by or helping me with errands, dropping off a meal, or even just asking how I’m doing or checking in makes having a chronic illness much less lonely.
If you know I am struggling emotionally, whether that be a result of medication, the isolation, or a mixture of things, be present. Call me up, stop by, or something little to let me know I’m not alone. Be the friend you would want if you were in my shoes, no matter how long a dark period might persist.
If you don’t know how to help, what to say, what to do, how to act, that’s okay. Google my illness or ask questions to understand, look up different activities or how to help friends with chronic illnesses. It is okay to feel like there is unfamiliar territory to cross, but don’t let that be a reason to neglect me, as I would not neglect you.
Don’t forget— I am still me. I’m much more than my disease(s) and have interests and desires far beyond chronic illness.
Thank you. Know that you are a beautiful, wonderful, kind person for giving your support and being a good friend to me. Know that I will always be that person in return for you.
Exhaustion, stress, sick of being single, & other word vomit for your approval
Looking for a place to live is exhausting, especially when your income is nill and you haven’t heard back from disability. I’m in a lot of pain today. Yesterday my blood pressure felt really low for no reason but by the time I checked it it was ok. I’m just getting over a short visit from Mr. Optic Neuritis. Since I’ve been wallowing a bit the last few weeks I’ve let the things I need to do pile up. Today was the first day of real productivity I’ve had in a while and Its left me in some serious pain. I’m a little worried because days like this generally require a few days of recovery… and I really don’t have the time for that. Its days like these that I wish I wasn’t single. Of course I, like most people, want to meet someone and fall in love and all that jazz (though I’m an adult with some realistic views of what that means) but these days my distaste for the single life has more to do with wanting a partner so that I don’t have to do everything myself. I’ve never really had that, even as a child I was the care taker sort by necessity. At this point, however, I’m tired. Really really tired. Lately I can’t even think about dating, going back to school, etc.. Spending hours and hours reading craigslist ads, calling realtors, knowing that you can barely afford even the lowest of rent without it impacting everything about your future, or soliciting from those you love and know can barely afford it despite their wanting to do whatever they can for you. . Knowing that something has to change or you won’t make it through the year financially is stressful in and of itself. Driving around all day looking at places. Wondering how I will be physically the day I have to move, or if I have the energy to pack etc. I really wish I had someone to share the burden with all around. Just a bit of word vomit for you all. I’m tired.