"Prelude to 'Calling You Out'"

“Prelude to ‘Calling You Out’” On the interweb, the post below this one has received a great deal of attention. Not nearly enough to consider it viral, but I recieved a great deal of feedback from Klippel patients and their families. A vast majority of those who provided written feedback admitted that the post resonated with them deeply, some too deeply, for that matter. Some of these came from patients, others from family members of patients, or simply people who realize the lack of adequate mental care in these situations. 

“Calling You Out” was indeed directed at Children’s Hospital Boston, but I knew that CHB wasn’t the only ones lacking in this area. If Children’s was lacking it, then surely other institutions were, too. This knowledge was then compounded by comments I received from various users citing the same thing at their own hospitals, including patients of the famed Mayo Clinic. The post in which I am writing now is perhaps one I should have written prior to “CYO,” but for some reason I just jumped right into my headline. Well, here is a solid example of why I feel as though the Vascular Anomalies Clinic at Children’s NEEDS an informed team of psych. experts on board, people who are educated on KTS and understand the mental ramifications it can bring about. 

“Klip….Klippel-Trenaunay Syndrome? Am I saying it right?” 

“Yes.” 

“Can you spell that for me?” 

This is generally how most of my introductory sessions with psychologists/psychiatrists have gone throughout the past four years. They would then, quite often, proceed like this...

“Wow, how bizarre, I have never heard of such a condition even with all of my years spent working in the hospital environment. Can you explain to me what it is and how it impacts you?”

At the age of 22, I can quite gracefully recite the gist of this often vile condition and how it impacts me physically, but it’s still not easy. And, after I am done, I often receive an answer along the lines of “wow…that’s complex” along with a look of utter confusion. 

Most of my sessions would then include the Dr. saying something along the lines of...

“I am not sure as though I can help you… I have never treated someone with such an isolating, rare condition before. I wish I had a group of people like you, as I would get you all together and speak. I think that would be very helpful.”

I then explain that I am in contact with various sufferers and their families, and they acknowledge how great that is. Still, many are unaware of how to treat a patient with such an intense, spontaneous condition that presents itself in so little of the population and are UNCOMFORTABLE doing so. That is why I feel the need to lobby for change in regards to this topic. Whose with me? - A

Calling You Out, Children's Hospital Boston

Anyone who reads this blog knows I often write quite highly of Children's Hospital Boston, as I have been a patient there since before I could walk, or even mumble for that matter. In fact, I have been a patient there since birth. Yet, there are some harsh truths in which I feel compelled to touch upon starting now, whether or not they are or aren't appreciated by some staff inparticular.

One of those truths is the inadequate/non-existent psychological/psychiatric care in the Vascular Anomalies Clinic. Swarms of Klippel patients flee to the Boston clinic for the expertise of the prominent doctors; I cannot deny that they do indeed deliver in terms of medical treatment and overall care, at least they have for me throughout the entirety of my life. However, in my due opinion, they are lacking greatly in terms of the psychological component. It is a well-known fact that anyone with a chronic illness is anxiety/depression prone. Not to mention, an array of other psychological disorders. It is really quite dependent upon circumstances and genes. However, knowing that Klippel is such a rare and harsh illness, there should undoubtedly be a psychological staff member on board at all times.  Heaps of us Klippel patients deal with never-ending chronic pain on a daily basis, and there are ample studies to support the thesis of how harming this is to the brain. However, if treated correctly by the right people in psychological field, this damage can actually be reversible. I advise you to do some of your own research, if need be, and see for yourself the countless studies that exist on this matter that have been conducted in recent times, If you have been to the CHB clinic, chances are you have met with an array of Klippel doctors who come together to help devise a plan for you to live your life in the healthiest manner possible.

However, I ask you this... What good is it to be in adequate physical health if you feel so emotionally crippled you cannot get out of bed? I have spoken with numerous Klippel patients over the years, and nearly all have fallen victim to mental illness of some sort. A great deal of us Klippel patients deal with depression, anxiety, and even body-dysmorphic disorder. Some engage in cutting as a release, and others are addicted to narcotics as their primary method to numb away the emotional pain. Some, like myself, are just going through the motions trying to make it by day by day.

The Vascular Anomalies Clinic needs to have a psychologist on board, someone who understands the ins-and-outs of this sometimes debilitating condition and the way in which it impacts its patients emotionally. My primary care doctor, Dr. Cloherety, told Dr. Fishman this to his face over the summer. I do not often mention Dr. Cloherety on here, but he has been with me since the day of my birth. He has always led my parents and I in the right direction, and has consistently been the voice of reason in the midst of all the chaos. In fact, he has always been my biggest advocate and for that I am eternally grateful. Needless to say, I have the highest amount of respect for him and trust him with my life.

So, while patients are already being seen by numerous doctors in clinic, why not have a psychologist meet with the child/teenager/adult whether separately, with their parents/family/spouses or both? There is a huge piece of the wellness component missing here, and until it is addressed, countless will suffer and struggle to find the right psychological care. Dr. Fishman, the coordinator of the Vascular Anomalies Clinic, is not only an incredibly skilled vascular surgeon and brilliant at his craft, but a kind, endearing human-being with a lovely bedside manner. I hope that he takes the words of my beloved Dr Cloherety and others into consideration when it comes to this pressing topic. Children's Hospital has always been a leader in the healthcare community, and to maintain this reputation there are indeed a few flaws that need to be tended to. I believe in you, Children's, and I hope that for the sake of all patients you take this message into serious consideration.  - A

“Maybe the truth is, there's a little bit of loser in all of us. Being happy isn't having everything in your life be perfect. Maybe it's about stringing together all the little things.” 

― Ann Brashares, The Sisterhood of the Traveling Pants