There are many reasons why I do my own research outside of what my medical and mental health professionals tell me.
Frankly, the main ones are:
I don’t trust that the professional is giving me the whole truth or all of the information.It’s not that I believe they are lying to me.It’s that they are so used to patients wanting the “quick, simple answer,” that they automatically default to that as their answer to any patient. Patients like me are fairly rare. Most people don’t want to take responsibility for their own health, relying on the doctor to essentially replace a parent telling them what to do about their health. I’m NOT that kind of person.
Many medical and mental health professionals are so used to lazy patients that become either lazy diagnosticians or authoritarian, arrogant tin-god figures treating their patients like unruly children. I’m a fully grown adult, thank you. I will NOT stand for any professional treating me like a child or a mentally-disabled person simply because I don’t have an M.D. or a Ph.D. Any professional showing either of these attitudes will never see me again, and I may even walk out of the door during the visit. I clearly communicate BEFORE the main portion of the first visit that I expect to be a full partner in my own health, and will not allow myself to be treated as anything less than that.In my experience, this latter attitude (the tin god) sadly is the default when dealing with a woman, particularly when dealing with an overweight woman. Given I’ve never been a man, nor have I been in the office when an overweight man is having a doctor’s visit, I could be wrong about the male versus female issue. What I do know is that as an overweight woman who smokes, I continually come across doctors who play that attitude. ADDITIONALLY, people like me are described as “non-compliant” or worse as a “SHPOS” making it more difficult to be treated rationally by other personnel down the road.
Why does this matter? Because, when it comes to your physical or mental health, people don’t believe your answers to anything. No, they ONLY believe what is written in your files by those professionals.
If those medical files state clearly that you are one of the following, you are screwed if you are looking for any kind of assistance, any kind of reasonable accommodation, or any other thing that makes you stand out from the average person (which, if you talk to any statistician, they will say is a “theoretical construct” (in other words, NO ONE ever matches the statistical mean). That means if you want SSDI, you have to jump through extra hoops just because some medical or mental health professional has stated you are “non-compliant” or worse, “malingering.”
In fact, more often than not you will be denied assistance or reasonable accommodation with either of those reported in your files.
This brings up the aside citation seen above. I just completed the MMPI-2 (along with other tests) because since I left my ex, my cognitive functions have been markedly lowered. But, that’s only a self-reported difference. I wanted to find ways to measure objectively that I am really experiencing that lowered cognitive function. When you notice that you are literally incapable of doing anything more mentally taxing than staring at a wall, it becomes perfectly obvious to you that your intellectual capacity has been damaged.
While the post doc that completed my testing stated clearly that I was “obviously doing my best on the tests” and “unlikely to be malingering” he stated clearly that my MMPI-2 test results were what is considered “invalid.” To understand what a test result of “invalid” can show, you have to understand the MMPI-2. However, as can be seen by the PDF journal article cited above, this becomes a very POOR assessment for chronic pain sufferers (including fibromyalgia sufferers – and trust me, my mother was finally diagnosed with fibromyalgia, but spent a good part of the late 80s being told she was either malingering or a hypochondriac). What this all ended up saying is that my “cognitive dysfunction” (i.e. brain fog) essentially is most likely being caused by depression and anxiety alone.
It’s not that I am unwilling to believe that the cognitive impairment I am experiencing is due to those psychiatric conditions. It’s that I have experienced chronic depression my entire life, and experienced severe anxiety since 2003 when I was diagnosed with high blood pressure (which went back to normal 4 months after I left the ex). My current experience is NOTHING like what I have lived with for years. A part of it is that this tester stated clearly that he felt that I was exhibiting Somatic Symptom Disorder (link goes to the “consumer” version, the professional version is considered different), and that it was likely that some of my cognitive dysfunction may simply be a matter of getting older. Essentially, he’s calling me a hypochondriac.
Supposedly, one of the so-called “cures” for this mental issue is having a doctor who is caring, supportive and trustful. I have developed such a relationship with my current doctor, Kimberly Haycraft, MD. In fact, I see her monthly to monitor my pain levels, how effective my medications are and monitoring my diabetes. The other so-called “cure” for this disorder to undergo cognitive-behavioral therapy. I’ve been aware of and have read intensively about this kind of therapy. I, in fact, still have a workbook that is used to support this type of therapy. I’ve even used many of the tools related to that therapy. Additionally, the tester encouraged the use of meditation (something I have already done DAILY for years, and continue to do), and biofeedback therapy (something I was sent to back when my high blood pressure was first diagnosed, and was fairly useless even then – I got more calm from my own meditative work than from the biofeedback).
I also attend personal, narrative therapy – in the SAME group that did my psych testing – every 2 weeks. It helps me to reform my knee-jerk responses (the bad or no longer useful habits that every human being develops from their life). It gives me a different perspective on those habits, so I can change them. And we are working to make sure that I do not automatically fall into the same mistakes that I have made in my past.
Just like my mother in the 80s, and just like my need to track down the reality behind my menstrual dysfunctions for most of my life until my hysterectomy (an understanding of something called “estrogen dominance” which still struggles to gain support in the medical industry since being defined by Dr. John R. Lee in 1996 – TEN YEARS after I did most of my pushing to find a reason BEYOND just “because you’re fat” for my SEVERE menstrual dysfunction), I feel a deep need to dig deeper into this issue. Not because I want to be seen as a special, sparkly little star. But because I know my body. It’s something that many people cannot actually say. But, I’ve spent my entire life experimenting – using the scientific method – on what things have made me feel better, what things have actually made a difference in my health, what things have been effective. You just can’t do that unless you have a firm grasp on and awareness of your own body and your own health.
Too many times, people forget that we know VERY little about the human body beyond some understanding of mechanical functioning. Every day, new insights about how the human body works, and what affects it come up – and many of them disagree with the “current understanding” of the human body. And we know even less about the brain, and how it functions in relation to the body.
But, God forbid a patient actually has a good idea of what’s going on inside their body. It might disagree with the issue that the doctor or other form of supportive professional wants to be true about someone’s body or mind.
If I had known about estrogen dominance, and the role of bio-available progesterone creams in dealing with it (as well as finding ways to avoid both natural and synthetic estrogens – soy being a BIG source of phytoestrogens), I would have probably never needed the hysterectomy, because estrogen out of balance is one of the causes of fibroids, like the one I had removed. If my mother hadn’t kept pushing about her pain and fatigue, would she have eventually be diagnosed with fibromyalgia? Or would she just have put up with the label of malingerer, and given up (something a LOT of older fibromyalgia sufferers did)?
This isn’t going to stop my ongoing research into this.