We all depend on others at one point or another. Whether it’s a significant other, a best friend, or a medical professional… without the support and care of others, it’s impossible to live a full and happy life. At times maybe we don’t feel like we can depend on certain people, or we don’t want to face the fact that we are dependent on others. But I’m here to tell you that dependence does NOT mean that you lose your independence. and when those people you count on let you down, it’s so frustrating. Especially when it comes to the medical professionals in our lives.
So as a person who has multiple chronic illnesses, I place my well being in the hands of those I trust, and since MS is what I consider my primary illness, my neurologist serves as the captain of my ship, so to speak. I must trust him/her implicitly to be on top of all the latest treatments, what’s coming down the pike, and to understand my history in order to make my future the best that it can possibly be.
On my way out the door for a big day….
After I was diagnosed with Multiple Sclerosis by a general neurologist, I made the decision to switch to an MS Specialist at a comprehensive care center. That was 17 years ago.
Initially I was overwhelmed by the thorough and personal care I received and I knew I had made the right decision. My first appointment was two hours long, and I had never experienced anything like that. The running joke has always been that he put me in a gown to examine me, which I was not expecting. My mother had gone to this appointment and was in utter disgust at my choice of underwear, as I was wearing a thong. As a teacher, you never want panty lines or anything else visible, especially when you stand in front of teenagers all day long!
Anyway, I have always been very involved in anything my MS Center wanted or needed. I would speak at events for them, including at their very exclusive wine tasting event where I spoke to the “high rollers” and we managed to get eight pledges to purchase new chairs for the infusion suite and we only needed seven. I spoke at the re-dedication of the center when we relocated to a bigger space in the hospital. Oh and also… I didn’t know I was on the agenda to speak that day but did so nonetheless because I believed very strongly that it was the best place for me (and any other MS patient) to be treated.
I’m very comfortable at the podium, speaking to the “high rollers”.
When I stopped working, I was asked (begged really) to volunteer there, as one of their volunteers had recently moved out of the area. I said yes without hesitation. And for two years, I showed up weekly for a four hour shift, where I worked my butt off. I did it to help because I knew they were growing and short-handed. I am a quick learner and soon I was answering phones, scheduling appointments, confirming appointments, and scanning papers into the system. I do believe that this was when I grew more and more disillusioned with the Center while I thought I was giving back to a place that had taken such good care of me through the years. Not only did I feel that I wasn’t getting the same level of care that I had for years earlier, I got complacent. Everything was easy and convenient. In one place I could see my specialist, get my lab work done, get my MRIs, and even get my infusions. And I kept thinking well I’ve had this disease for so long already, my history is there, and what else can they do for me at this point?
After two years of working for free (and only because I was asked), I was fired without any conversation about it. They simply kept telling me “there was no work”, which I knew was a lie, and if they didn’t want me seeing how things ran then they never should have begged me to work there in the first place. And the fact that I didn’t even get the courtesy of an explanation really hit me hard.
Additionally, my appointments no longer felt comprehensive, and I spent on average less than half of the 20 minute time slot I was allotted with the neurologist. On the patient portal I found errors in the dictation, and details I deemed necessary missing from this very important documentation, especially since I am on SSDI and they regularly ask for doctor’s notes in order to maintain my status (and income). I found certain treatments being pushed on me that I did not want, and had to threaten to leave to get the one that I wanted. This was not the kind of care I had grown accustomed to, and I knew I deserved more.
I had been unhappy for a while, highlighted by the fact that I kept a short list of all the best and well-known MS specialists in the area, along with their locations and phone numbers in the back of one of my notebooks “just in case”.
So this past December, when I went for my semi-annual treatment I was humiliated by one of the medical professionals who talked to me in a way that no person in that position should talk to a patient… and certainly not to a peer who is a highly educated woman. It was on that very day that I knew my time was coming. This was not the same place I had grown to know and love. I no longer felt safe or well-cared for. I no longer had confidence in the people we as patients depend upon most.
This is on the day of my December infusion, sitting on the floor stretching, and grateful for the mask that hid how I was really feeling.
And scary as it is to make a change after calling this place “home” for all these years, I know it’s time. We all outgrow things, sometimes we outgrow people, and sometimes we need to make changes to ensure the most positive result living our own reality. Staying on top of your team means that you are advocating for yourself (because who else will?) to make sure that you get the treatment and care that you require and deserve.
Just a little bloodwork to cover all the bases! (Sorry to the squeamish readers out there!)
I don’t regret not making a move sooner, because the universe has always guided me when and where to go. If I didn’t get “fired” from volunteering there, I wouldn’t have ended up at Marty’s Place Senior Dog Sanctuary, where I have been happily volunteering for over 4 years, and I’m showered with gratitude every single shift. And I needed to see clearly how drastically things have changed which only only comes with hindsight. Knowing your worth is beyond priceless and I always want the captain of my ship to see my value as well.
Three hours together, just to collect data, and an appointment in six weeks to discuss it all. Now THAT’S what I call comprehensive!
It all boils down to the fact that every single patient deserves to be treated as though they are not just a number passing through the doctor’s office. We are wives and husbands, sisters and brothers, aunts and uncles, and moms and dads. Most importantly though, we are human beings. We have feelings. And when we deal with chronic illnesses we count on our medical professionals to help us navigate the uncertain waters in which we swim. If you aren’t given a lifeline by the captain of your ship, then perhaps it’s time to find a new crew.