Personal Medical Advocacy & The Doctor Patient Working Relationship

As witnessed by this blog, my life has not been easy, especially my medical concerns. My mother, the matriarch of our family, was a classic Grandiose Narcissist with Psychopathic tendencies.  So she never wanted to be upstaged, not even by her child, especially a girl child, when it came to attention seeking for her medical issues. The conditions I and my daughter have run through the female line of our Sicilian family, but this was not yet known when I was a child, so my mother took my medical issues as an affront to hers, and at worst a form of competition. For example, two years after a diving accident left my spin greatly sublexed, and was beginning to cause chronic pain, numbness down my left leg, and black outs at the age of 15, we went to see a chiropractor for the first time in our lives. The doctor looked at our x-rays (mother and I) and told my mother that though her spin was slightly curved, she was in good shape, but I, on the other hand would be in a wheelchair by the time I was 30. Being a dancer and training for a career in dance since I was 8 years old, this was horrible news, to say the least. My mother's reply to this news: "Yes, but what about me, what about me?". The poor confused doctor explained it all once again, emphasizing how well she was despite the slight curvature, and how direr my condition was, and my mother, bless her narcissistic heart, said, "Yes, I understand that! But what about me, my spin looks worse? What about me?"  The doctor, now in shock looked at my mother, than at me, than back at my mother and said "I just told you that your daughter will be crippled in the next 15 years if she does not get immediate treatment for her damaged low back. Doesn't that mean anything to you? You are fine, but your daughter is in need of treatment right away." My mother looked at him with confusion on her face, then suddenly realized how she looked to him, and suddenly tried to quickly backtrack and feign concern for me. This was not the first time she treated my medical needs as an insult to her, just the most egregious at that time. Later, about 2 years or so, she came in, saw me laying on the floor in the living room, stretching, and pronounced that she could no longer afford my chiropractic medical treatments and that I would have to learn to adjust myself. Two weeks later she came home with my older brother, a prodigy on the guitar, toting a brand new electric guitar and amplifier. My step-father was angry, stating that we could not afford the several thousands of dollars the equipment cost, but my mother insisted he needed the upgrade to promote and support his talent. I sat there stunned, finally knowing fully what my mother thought of me and how little she cared about me or my career as a dancer. I never told my step-father, so afraid I was of loosing him as well, should this cause him to leave her and us.

The reason for this sorted story? To show why, and how often, we need to become our own medical advocates. If your family is there for you, that is great, but often those with undiagnosed and/or difficult medical issues either never have or loose the support and advocacy of family and spouses, especially true for women. Study after study shows that when men become chronically ill or disabled, their wives tend to stay with them more times then men do with a disabled and/or chronically ill wife. "Indeed, research suggests that ... women are more likely than men to be victims of what's known as partner abandonment. A 2009 study published in the journal Cancer found that a married woman diagnosed with a serious disease is six times more likely to be divorced or separated than a man with a similar diagnosis. Among study participants, the divorce rate was 21 percent for seriously ill women and 3 percent for seriously ill men. A control group divorced at a rate of 12 percent, suggesting that if disease makes husbands more likely to split, it makes wives more likely to stay" -  http://www.oprah.com/relationships/why-men-leave-sick-wives-facing-illness-alone-couples-and-cancer#ixzz4O2VJaokJ and yes, this also happened to me with my now ex-husband.

So, when we become disabled and/or chronically ill we often have to go it alone.  Not only do we often have to go it alone, we are often forced to fight with doctors, nurses, specialist, insurance agencies, and benefit programs, to receive the best care we are in need of and are entitled to. It took me a long time to both trust myself and to confidently speak up for myself and my needs. I think having a disabled child as well helped with that development. I may have been raised to not fight for myself, but that did not keep me from fighting for my daughter. Before the internet, I spent hours and days in the library combing through medical journals, the professional edition of the Merk Medical Manual, and the PDR (Physicians' Desk Reference of drugs and medicines). I learned a great deal. I became educated in the ways the human body is normally and the ways in which mine and my daughter's were not. Back then if you came into the doctor's office with this type of knowledge you would be pegged as a malingerer, especially if you were a woman, let alone an over weight woman. If you were on welfare as well, forget it, they dismissed you completely. The more educated you became, the harder it was to work with your doctor. I was all those things: educated, smart, female, over weight, and on welfare because I could not work. So what I would do is pretend to be less smart and educated as I was, so as to not challenge the ego of the doctor, and tried to ask leading questions and such, to get us in the right direction. It was both exhausting and galling. The funny thing though is that as the diagnosis and positive results began to pile up, I was still treated like a hypochondriac imbecile by many doctors and other medical professionals, even to this day.

Because of all of this, my daughter and I have learned to interview new doctors. When we had to change our primary after our beloved doctor of 20 years died suddenly, we decided to interview prospective doctors rather than simply trying them out. And yes, we told them they were being interviewed. It set the possible relationship on the right footing from the get go. Our second interview ended up going so well, we feel in love with him, AND he with us. For the past five years we have had a magnificent working relationship. Yes, a WORKING relationship. We are partners in my and my daughter's medical care, and it works wonderfully! And because of the success of this relationship, I have become more confident, even outwardly so, with my knowledge and my autonomy. It is hard to advocate for yourself when you must rely on the good will of your medical team, and it can often become a battle of wills, especially with those medical professionals who are so threatened by you that they are willing to lie, in writing, about you and your condition. This has happened to me and my daughter more than once. I have successfully had such things ex-sponged or circumvented when they have happened, and I advise that you should always challenge such actions, for it will make getting the help and treatment you need easier in the long run.

These days, with the internet, we have access to so much more information, though a lot of it is junk, or badly created. To suss out the good from the bad, stick to medical journals of high repute, that doctors and researchers look and refer to. Pub Med at the NIH (National Institute of Health - https://www.ncbi.nlm.nih.gov/pubmed) and the CDC (https://www.cdc.gov/) are great places to start. From there, there are the New England Medical Journal and Lancet magazines, as well as specialty magazines for each field of medicine and often for particular medical conditions. Often I use Wikipedia to get me started and to give me a general overview. I of course take what I read in Wiki with a large grain of salt, but often the info is good and can give you an overview of what you need to know and can take to your doctor. From there, there are footnotes in the Wiki entries, with links to actual medical journals and reports for both better study, and to asses the accuracy and validity of their claims and studies. Learn about what makes a good research study and what does not. Be analytically critical of all you read, and what ever your medical team claims or says. Do your own research and be armed with well sourced knowledge. Also, if possible, train someone to be your advocate if/or when you are not able to be. My daughter and I advocate for each other all the time. We go to doctor visits together, and to medical procedures as well, so that we can advocate when needed for each other. 

Having a good and honest working relationship with your medical team is paramount to having good medical care, and can even save your life. It is your life, your body, and no one else has any rights over it. Remember that when visiting a medical professional. You need not be rude or arrogant, that is a given, but you may often have to stand firm, and even ask for a second opinion, or to change professionals. Also, your responsibility in a working medical relationship is to stay informed, to be in contact, and to not take your doctor for granted. Most medical professionals went into the profession to help people, but they lack the training in working relationships with their patients. You will need to train them and show them that you can be trusted with such a relationship. Doctors are also human, so treat them as you would a friend or family member with the same respect and kindness, as well as telling them how much you appreciate them and how well they are doing. They need to hear this as well, and makes working with you easier for them. The bond between you and your medical professional can and will become stronger, and the both of you will benefit from it, and so too, will your medical care.    

Why the need to share my life with others

This post was begun last winter, but was never published. Why? Because this last year has been hell on wheels in both good and not so good ways. Last winter and spring saw the joy and stress of a wedding in the family. My niece, to be precise, who is more daughter than niece. This summer was awash in the increased inability to breath, and all that comes with that. And here it is now fall and Halloween is just around the corner. It seems that my life is becoming this roller coaster ride more and more so with each passing year. And since I seem to have a breather at the moment from that wacky ride, I think I should finally post several of the blog entries I have been holding aside till now.

Here is the first, from last winter:

At the beginning of August 2015 I expressed on Facebook, to family and friends, how I had a growing need to share my and my daughter's life with them all. I felt the need to show the reality of it all, the need to be understood. It was scary, and writing about it, creating the list was often like smashing one's fingers in the car door. It hurt. It hurt to see it, write it, to have to pay attention to it all at once. Normally we ignore what is not being a squeaky wheel, and "that" is how we do it. "That" is how we survive. So writing it down, having to organize it all, THAT was sheer pain, emotional pain. And it still hurts. In some ways I am in shock. I keep seeing the vastness of it and mentally shaking my head, saying over and over again "That is not possible! That just can not be real, that can not be our reality! No one could survive that, let alone decades and decades of it!" And I haven't even listed all the endocrine and family Metabolism problems. Yet it explains how I feel now and the quickly growing incapacitate that I am going through. Soon Mulu will have to bath me because that is becoming an issue. She already has to brush my hair because my hands, arms, and upper body are in so much pain, and dysfunction. Most of you do not know, but as a child I was always moving. I danced, and cavorted, stretched, twirled all the time. Even sitting I was in motion. Now I sit perfectly still, for doing so minimizes the pain that is all over my body, even the soles of my feet and palms of my hands, hurt all the time. These days the emotional suffering is as bad as the physical. I cry because I want, need a hot bath, but can not fit in my tub. And if I do manage to sit in it, I can not get out without wrenching my back, and often throwing some of my rib heads out. I often lay on the couch dreaming of hot bath water. Showers, though great, just do not cut it anymore. So it is difficult to see my life diminish more and more everyday, and to do so virtually alone. That, I think, was the impetus to share the reality of our lives with all of you. That is why I am writing this blog.

I have been thinking a lot about all that everyone has posted to me this past week, as I had my emotional melt down. Thank you, by the way LOL. One friend said that looking for a "heart connection" via FB is probably not a good idea. I agree. But that is not what I was seeking, though that did come into it afterwards. What I was trying to do was be seen and to be heard. Do you know how many times I get "But you don't look disabled!", "You don't act disable! Good for you!", "You seem to be handling it well! You are so happy and cheerful! How wonderful!", or even "Well you don't act or look disabled, so it must not be that bad." Now these come from both strangers and friends, mostly unwittingly, and even from doctors and therapists. It seems people have the need to diminish the severity of your condition and life, to look at the bright side, as if you are not already aware of that. It makes them feel better and they think they are helping, or that that is their job at the moment. Denying a person's reality makes you feel better, but only harms the person you are speaking to. Empathy and compassion are more important and helpful than trying to "fix it", unless you are asked to.

So, writing this blog was born out of the realization that my needs are not being met, unreasonable expectations are being made of me, and people get frustrated or disappointed in me for not performing as they think I should, because they are unaware of my actual life. Like when I go to sleep and when I wake and thus have an inconvenient schedule, or how hard it is to be on time because I am fighting massive pain and/or exhaustion, or I simply can't breath and move fast at the same time. I realized that by not opening up about the realities of my life I was doing myself a disservice. It is not about "Oh pity me", though it can feel like that when speaking up, it was and is meant only to make people aware that when I say I need help, that if I do not get help, then what ever I needed help with never gets done. Or I injure myself trying to do it by myself. It is also so very hard to ask for help. I hate it with a passion, but as I get older, I need to. I am also so very tired of having to explain myself, my actions, my choices, and so forth, over and over again to people I know and love. I hate burdening people, but I also realize that my pride also gets in my way when I do not share all this.

Also, another reason for the "dreaded list" is because when people ask you "How are you dong." and you tell them honestly, even just a little, you soon realize they did not want to really know. So I and others like me say "Oh I am fine." Even when we are not, which is usually the case with chronic illness and chronic pain. There is only levels of bad and not as bad, never "fine". I had a friend once who would ask how I was, and when I said that I was doing better they would get very happy. But when I would say that things were bad she would get upset with me, or confused. I finally figured out and asked her if she thought that when I was better, that meant I was "getting over" my medical issues. And yap, that is exactly what she thought. I had to explain that "better" was relative and that I would never really be fine, but that fine to me meant that I was tolerating all that I had to deal with better than usual. After she realized that, our whole relationship change and improved.

So that is my thoughts on all this. And, though it was hard, and I cried more than once, it was good to write that long dreaded list, and a lot of good came out of it because of all of you that replied and acknowledged my situation. Thank you all for that. It got me through it!