Two years ago today, I was in the midst of an extended stay in New York City. (Even though I am a U.S. citizen, I’ve been residing in South America for the past 10+ years.) The reason for my visit: to go to the Hospital for Special Surgery in the hopes of receiving a new treatment for my rheumatoid arthritis, which had spun out of control and which was no longer responding to the pharmaceutical treatment options that were available down here where I live.
I have since opened up about some of the many challenges that I faced during this period, when I reached rock bottom. What I haven’t spoken much about are the details of what actually took place, when I walked into this hospital looking for something — anything — that might be able to help me.
My primary reasons for not sharing my story were twofold.
First, I was so shocked and hurt by what happened that immediately upon returning home, I scheduled numerous sessions with my psychologist in order to work through the emotional pain of what took place. I knew that I’d probably reach a point when I would be ready to publicly talk about what happened, but that until I then I didn’t want to write words that might seem to come from a place of anger. (My rheumatologist, who has been treating me for years, actually started trembling when I updated him on some of the things that had taken place — that is how upset he was!)
Second, I met many professional and caring individuals within this healthcare center — nurses, lab technicians, and support group coordinators, that I didn’t want to paint the entire institution with one broad brushstroke. As is the case with most organizations, one will find good, caring people and one will find, well, let’s just say…the exact opposite.
I’ve reached that point, though, where I am ready to share.
I share my story because I think that by doing so, I will finally be able to gain some closure on what ended up being one of the worst experiences of my life. I share, because I hope that these words might be able to provide some support and encouragement to individuals who currently find themselves, or who might one day find themselves, in a similar situation. I share, because a reporter from a major international newspaper recently encouraged me to talk more about some of the challenges that I’ve faced while trying to receive healthcare. And I share, because just a couple of hours ago I received an email from the Hospital for Special Surgery, asking me to share my story. (I really did! Okay so it wasn’t a personal message directed specifically to me, but it was an announcement about the hospital’s newest PR campaign titled — you guessed it — “Share Your Story.”)
So, here’s my story of being “treated” for rheumatoid arthritis at the Hospital for Special Surgery in New York City:
- Upon seeing me for the first time, the very first thing Dr. C. Ronald Mackenzie (former chair of the American College of Rheumatology ethics committee, and current ethics chair of the Hospital for Special Surgery) did was ask: how does social security disability work, and why are you applying for this program? As far as he could tell, he opined, I was a perfectly healthy young man. (Never mind that he had never even met me in person up until a minute or two before, and also had not yet had a chance to look at any of my medical records. As far as my extreme difficulty with any type of movement, as well as my forearm crutches, well…I’m not exactly sure what he thought those were a sign of.)
- The next thing Dr. Mackenzie did was glance through the medical notes that the other doctor in the room, Dr. Reena Khianey, had just spent the previous hour jotting down. Dr. Mackenzie pulled out a pen and immediately started crossing out item after item on the list of diagnostic tests, labs, and radiography exams that Dr. Khianey had prepared. We have to look at his knees and at his eyes, Dr Khianey protested — those are the patient’s biggest areas of complaint! We are not going to look at his knees and his eyes, Dr. Mackenzie replied — I already know that they are not going to show us anything.
- On a follow-up visit, I was informed by Dr. Mackenzie that due to my personal financial situation, he would *not* prescribe me any of the newer biologic treatments, even if he did determine that I was (medically-speaking) a candidate for such treatment options. When I told him that it was his responsibility to prescribe medications, and that it was my responsibility to find a way to pay for them — that I even had a letter from the hospital’s financial assistance office describing some of the prescription assistance plans that I might be eligible for, he replied that I was misinformed.
- He went on to say this was clearly a case of my subjective analysis versus his objective evidence, and as far as he was concerned, I showed no indicators of having rheumatoid arthritis. When a friend who accompanied me on this visit asked if my high prednisone use might not be masking some of the symptoms of the disease, Dr. Mackenzie responded by standing up and walking out on the both of us — made all the more awkward by the fact that we were in his office!
- On subsequent visits, when I was displaying very obvious (and serious) symptoms of corticosteroid withdrawal, I was asked if I was on any illegal drugs.
- For months, the hospital’s accounting department kept sending me bills in the amount of tens of thousands of dollars, even though I had a letter from the very same hospital’s financial assistance office detailing what my reduced co-payments were to be, and even though a physical copy of this financial assistance letter was provided to each and every department that I dealt with; this error was corrected only after my account was eventually sent to a collections company.
- One day, I received a text message from one of the doctors assigned to my case, telling me that it might be best if I went somewhere else for treatment.
And this, in a nutshell, was what happened during those three months that I spent in New York City.
In the end, however, I learned a *very* important lesson: hope is not always something that can be found by taking certain medications, nor is it always something that can be found from healthcare professionals or healthcare institutions (even supposed “top ranked” ones)…and don’t get me wrong, I’m not anti-med, and I’m not anti-doctor. I know that a lot of people benefit from many different medications, and I know that there are more good healthcare professionals then there are not. I’m just trying to make the following point: hope is something that resides within each and every one of us, and the sooner we realize this, and the sooner we start to tap into the hope that is inside of us, the sooner we’ll be able to overcome any — and all obstacles — that are placed in our paths.
I could look at my experience with the Hospital for Special Surgery, and use it as a reason to harbor feelings of anger and sadness, I could have used it as a reason to give up (which I darn well came very close to doing)…or I could look at my experience, and see it for what I was ultimately able to turn it into: an impetus to OWN my health, and an opportunity to realize that no matter how challenging things might get, it is always within my ability to stand back up, and it is always within my ability to keep moving forward.
There will *always* be doors that close on us — an uncooperative doctor, a difficult financial situation, or a disease that is not responding to treatment — but as the saying goes, when one doors closes, we just have to find a way to open another one. I didn’t find the answers that I was looking for, but I did the find the answers that I needed. And for that, I am grateful.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Comments 14
I think I started reading your blog about the time you were in NYC. I too have had numerous medical misadventures and dealt with my share of medical idiots. I congratulate you on telling your story in your blog. I hope you continue to tell this story over and over again. And in the press so people can understand that medical egos have no place in the treatment of patients.
That doctor should not be allowed to practice medicine any more. He should be formally reprimanded by the hospital about it. He should also be reprimanded by the state medical boards. I would not hesitate to send letters to each of the corresponding medical organizations and file a complaint with the state medical board. The more public you are with this story, the more likely you will probably find more patients who have been treated the same way.
As to the financial geniuses who managed to mess up your billing? That’s just par for the course. Good luck and tell your story!
I will never go near the Hospital for Special Surgery for treatment of my RA now that I read what happened to you. I’m so upset you were treated this way, I left a message for HSS on their Facebook page telling them I will never use their services (of course, they will never allow the public to see my message)! I also shared your post with the Facebook RA groups that I belong to, so hopefully others who are similarly afflicted will not use HSS….and I’m still mad! I am glad you survived the devastating treatment you undeservedly received at the hands of that arrogant “doctor”, because you inspire me to keep going and to strive to take better care of myself every time I read one of your posts.
I’m sitting here after reading your blog and I’m feeling so many emotions. I’m outraged for what you must have felt dealing with such a condescending ass. I have run across a few in my life but when seeking out “the best” at “the best” institutions, you go in believing that part of the reason these doctors have such a great reputation is good rapport with their patients – something that all of us RA patients KNOW is imperative for good care.
I’m also feeling a strong need to have this man held culpable. As a previous poster noted: if he did this with you, he did it to others. I’m going to take a page from that poster’s book and go to the hospital’s website, FaceBook page and anywhere I might be able to post a review on this doctor.
The funny thing about this whole situation is, if that doctor had known how much influence you actually have in the world of Rheumatoid Arthritis, he wouldn’t have dared treat you poorly. He looked down his nose at you because of your financial situation and thought he had you all figured out. Surprise! I would truly like to help you bring attention to this man’s true nature and I’d LOVE to be there to see his face when he discovers that the person he tried so hard to dismiss, is actually much more respected than he is.
Please keep telling this story.
It absolutely sickens me that some of these doctors are able to “practice” medicine. IMHO, they should be banned from the medical practice and never see another patient again. I’ve had numerous experiences with “doctors” like this and it’s pathetic. While I don’t have RA, I have something very rare and was told over and over and over and over that I couldn’t POSSIBLY be ill. Really? Am I making it up? Do they think that people sit around and thumb through medical books while picking a random page and declaring from the rooftops “I’ll pick THIS one!” UGH!
One suggestion to review him is on healthgrades.com or other online doctor review services. Good luck.
Not all of our most trusted professionals in the medical field deserve that honor. Betrayal of that trust by even one doctor can have a cascading affect on your total well being, as you have described. Not only causing delayed, wrong or no treatment at all-which potentially compounds medical issues-but erodes trust in all relationships. I’m so sorry you were treated badly. Your ability to write about it now with clarity and purpose is testament to your inner strength and compassion for others-even those who’ve wronged you. What bothers me most is, like many other professions and industries is the lack of oversight by peers. Too many doctors/nurses etc, look the other way, ignore, and protect their coworkers at the expense of the patient’s safety, and health. I’m someone whose faith is based on the whole and not individual so even though this individual and his colleagues did you a disservice I know you will find the help you need and deserve through others. Be well, stay strong.
I’m so sorry for the way you were treated at this doctor’s office. This further proves that even the student at the bottom of the class still gets to be called ‘Doctor’.
I have never been to that hospital, but I was mistreated by Dr. Syed Rasheed in Beckley, WV. He is an endocrinologist that I had been referred to as a new patient when I moved here. I am a type 1 diabetic, very brittle, with hypothyroidism and a goiter as well a PCOS, Rheumatoid Disease, Fibromyalgia, Sjogren’s Syndrome, and several other serious health problems.
I was there for an initial work up and because my goiter was getting larger. I also was having other problems such as migraines and severe fatigue.
Dr. Rasheed spoke maybe ten words to me the entire visit. He did not palpate my throat to feel the goiter as my other endocrinologist did. Instead, he looked over my chart and began speaking into his recorder, saying things that were very wrong, such as I had no history of headaches, I had good A1C (at the last lab it had been 10!!!!) and that he found no presence of a goiter!!!
When I and my husband spoke up and tried to correct him, he did not speak a word, but simply got up, gathered my chart and left the exam room! I was so upset I was in tears!
My husband helped me put my coat on and his nurse came in and asked us where we were going. I said that I had never been treated by such a poor excuse for a doctor, that not only was I not examined but that the statements he was dictating were outright lies, and that I was leaving. She handed us a paper to take to the front desk for billing, and my husband told the office manager that we did not expect to be billed for the visit, as the doctor did not do anything for me, did not examine me, and if we found they tried to bill either of our insurances we would deny the claim!
Well, not only did we end up denying that claim, but I reported him to the state board and to Medicare. A few months later, I went into Diabetic Ketoacidosis and had to be admitted to the ICU at the local hospital. I specifically stated that Dr. Syed Rasheed was NOT to be treating me, that one of the other five endocrinologists could handle my case.
Do you know that idiot came striding into my room like he was going to treat me whether I liked it or not? I started screaming at the top of my lungs “GET OUT YOU QUACK!!!” over and over and he couldn’t run out fast enough!!! LOL
I was treated by a much better doctor afterwards, and a few months later, Dr. Syed Rasheed retired from practice! It seems that my reporting him to my insurance caused an investigation and he was found guilty of many violations in billing and claiming to be performing tests and exams on hundreds of other patients who he had never laid a hand on or even taken a blood sample from!
So, I urge anyone who is a victim of shoddy medical treatment to raise their voices, both literally and with the governing agencies!!! We must rid the medical field of these charlatans and stop them from mistreating and robbing patients who need care!!! God Bless!!!
I’m heartbroken that they would treat you in such a horrible manner. You are blessing to so many and I can’t imagine the pain and frustration you suffered while here in NY. I’m glad that you have the support system you have and are able to share your story with you. God bless you RA Guy.
Hi Guy, shocking story and to hear these types of stories aren’t too infrequent in the US makes me feel sad that people across the pond are suffering so much and being subjected to such failings my the medical profession. Here in the UK doctors must work to the GMC duties of doctors 1st one being “make care of your patients the 1st concern”. We are appraised every year and need to signed off to be licensed to carry on working. Patients can complain directly, or if severe can take their complaint to the General Medical Council, NHS England or the independent onbudsman, all of which leads to medical defence involvement and a thorough procedure. So the doctor said you showed no signs of RA, what’s your rheumatoid factor? Do your X-rays show no erosions, subluxation or other signs. No nodules, raised inflammatory markers? If any of these are present and he denied you had the disease, if this was the UK you would definitely have a case for medical negligence leading to physical/psychological suffering and deterioration of your condition as you were not given a trial of treatment. I’m not sure why you are letting this slide, granted by bringing this to our attention the doc will be aware he has been exposed, but he needs more than that, he needs to feel what it’s like to have something taken away from him, his honour, pride, respect from others, he is an old school rheumatologist maybe, a pred pusher, hopefully a dying breed, I think you should take this further if you can which will deter other doctors in such a powerful position who hold the cards for helpless suffering individuals that they need to care for their patients. Good luck and use your power with words and powerful mind to bring this idiot down!
I keep wondering why he treated you in that manner right from the start. Do you think he was aware of your blog and social media presence and that made him treat you with such disrespect? Did you receive any type of treatment while you were there? The bills you received seem outrageous just for a few meetings with him. And if he felt that you do not have RA, what did he think you have? So many questions. Anyway, I hope that karma pays that jackass a visit real soon. Take care.
The sheer arrogance of some so called “medical professionals” defies belief. Oh to walk a day in the shoes of a RA sufferer !!!!
Hi Guy,
I have SLE, but I came across your site as I write for a medical magazine and was doing a piece about men with RA (your site will be mentioned!). I am SO sorry for this experience….I have had nothing but good experiences with HSS but with a different doctor (and I have SLE and saw Dr. Berman who is amazing). I have definitely been treated like this before by other doctors, though, and this is disgusting. Sending you lots of love and encouragement.
-Anna xxx
It is very worrying for any patient with serious arthritis to be treated so badly by a person in a position of power.
I am sorry to hear you had that bad experience when what you needed was help. Best of luck, Francey
I have just come across your blog/foundation today. It is a wonderful balance of informative and supportive and real. I am incredibly inspired and excited to trawl through the pages.
I too am shocked and sad that you had this experience, but at the same time, frustrated and disillusioned because this happens way too often. I have come across a plethora of terrible practices and manners, and that’s only in my limited experience in health care as a working professional (not as a health practitioner, but a related field that works with health practitioners) and personal health journey. And it certainly makes me angry and resentful at times.
Sometimes I try to realise that we are all cogs in the machine, and every single industry has their flaws and politics and broken systems. And also, the people in the medical system are just humans too. Doctors may have specialist knowledge but that does not necessarily mean they are “smarter” or “superior” beings, they are just humans who happen to have a specific set of knowledge but who can also have very human traits of being arrogant jerks. But doctors are part of the medical system which in our era (especially Western culture) wields significant authority and power that can be used unjustly. It’s hard to reconcile how to feel about this and how can we possibly navigate (or avoid) the system. Your reflection on using this experience to drive you to OWN your health (and also in another post you wrote about realising that hope is WITHIN ourselves) is ultimately the right attitude to take when trying to play this game. No-one else has as much of a vested interest in our wellbeing than ourselves.
Congratulations on working through this difficult event and being able to reframe this experience into something useful for your journey, rather than resentment and anger. For many people experiencing poor health care, we can very easily get stuck in resentment and anger, which ultimately is to our own detriment in numerous ways. Thank you so much for sharing this story and reflection with us.