Houston we have a problem.
Dear Station 19 writers, producer, directors, and creators,
I must have started this letter a few hundred times. Firstly, thank you for finally bringing up a rare disorder. Chronic Regional Pain Syndrome is rare and I’ve never seen a character portrayed with it before. Sullivan is an excellent character. Thank you for finally bringing it to light. However, we have a problem. I love that you are showing the debilitating pain and frustration of an invisible illness. I appreciate that you show the struggle of how to address a chronic condition that can ruin a career. But you are completely missing the point.
This magical surgery “Tom Koracick” promises is actually surgical sympathectomy, a RARELY USED AND VERY INEFFECTIVE treatment option. There is NO magical surgery to cure this. CRPS is CHRONIC, which means it does NOT go away. The STEM/TENSE machine is NOT a solution, it only mitigates some pain and most of us find little to no relief. It’s a MAJOR surgery (i.e. will likely worsen CRPS) to have a spinal stimulator implanted and even then there is a good chance it will not help forever. Every surgery is a risk of a major relapse or your condition spreading. It’s not a SOLUTION. It’s a life time of balancing side effects of medications and the side effects without medicine. Treatment options for CRPS are medications, physical therapy, aggressive desensitization therapy, sympathetic nerve blocks, stems, and, yes, occasionally a surgery. HOWEVER, CRPS is a phantom pain style syndrome. There is rarely an actual specific injury continuously sending signals, rather the nerves of the body send signals irregularly and without trigger or cause. Clothing and air blowing on the affected area cause crippling pain. I couldn’t even wear pants due to the never ending pain cloth against my skin caused me. Where is your portrayal of that? Where are the days, weeks, months, YEARS of begging for an answer as to why my body is suddenly crippled and I cannot function? Where is the debate between taking pain medications that are thrust upon us as a catch all,-don’t really know whats wrong -solution and the resulting decline in cognitive abilities? Where is the struggle to even get a prescription and the ridiculous offered alternatives like muscle relaxers? The only real struggle shown is the addiction to fentanyl which, side note, we CANNOT get prescriptions for and no doctor would immediately prescribe to a newly diagnosed patient.
Where is the attempt to use EVERY SINGLE ALTERNATIVE and finally an actual opioid medication only for it to stop working over time and leaving you in pain begging for a real solution? Let’s not forget the constant assumptions about chronic pain patients that we are all just pill poppers. We have to be registered and labeled as a pain patient before even being considered for a pain medicine. Anytime I go in to fill a prescription, let alone try and get a prescription for something else like root canals or broken bones, I get 20 questions about my usage and why I’m on these medicines. What you are portraying is only a TINY percentage of cases of us. WE ARE NOT DRUG SEEKERS. NO ONE wants to be placed on pain medication. We want answers and solutions not band aids. We do not seek out drugs to solve it. You are perpetuating a very wrong assumption that HURTS patients like me. We do not take medication to get out of pain. We take it to dull pain enough to attempt to get out of bed and function.
Your portrayal hurts people like me. Most of my generations first experience seeing medicine, diseases, doctors, police workers, firefighters, etc, was through TV. I watched House growing up and fell in love with medicine. I looked up each diagnosis to see if the symptoms were actually what they showed on the episode. But most people aren’t like me. They see something and accept that it’s the whole truth and something in its entirety. Alex Trebek discussed his cancer symptoms on TV and has helped so many people know what to look for with Pancreatic cancer and even allowed some people to get an early diagnosis. Patients like me eagerly seek out a character or even a celebrity who have our condition, especially with how rare it is, and can SPEAK out for us about how difficult and heartbreaking it can be. When you show someone having a condition but portray only a tiny portion of it or only the negatives, people get the wrong idea. We just started getting passed using “Bipolar” as only a negative description (a stigma I have lived with for over a decade as well) and here we are again with another negative portrayal. Don;t get me wrong, you aren’t the only one with a stigma issue. Dissociative Identity Disorder is in the worst shape and the media has some serious work to do to reverse the damage they have done to so many unique and strong individuals facing a very difficult circumstance they cannot control, but I digress.
Every episode I keep waiting and hoping that the few episodes “drug addict” stint will be moved past and we can actually see how difficult and CONSTANT his struggle with CRPS must be. Instead, I see it ignored and only randomly appear when it’s convenient for a dramatic moment. On the McGILL Pain Index, CRPS is considered the MOST painful chronic condition and the highest ranked condition of all. It sits WELL above unexpected childbirth and amputation (ask any woman during surprise labor and she can confirm it beats amputation). With a condition this painful, there is no way someone can just walk around, go to the gym, and act like nothing is happening during a flare. We are excellent as masking our pain, and even eventually learn to do things while being in pain. But for someone recently experiencing it (and some how magically being diagnosed immediately…) this hasn’t happened yet. Even if you fight through the pain and keep going, certain limitation begin to emerge. You gait is off, showers and towels are a problem, weightlifting is off kilter. Even with adrenaline pumping through your body, your nervous system can and will override that and set you into a spiral of screaming pain for hours.
Let me explain how CRPS actually works. According to the NIH, “CRPS is characterized by PROLONGED or EXCESSIVE pain and changes in skin color, temperature, and/or swelling in the affected area.” That’s where Chronic comes in. As in it goes on or is experienced longer than 6 months. You can’t just wake up and have CRPS. You wake up with pain and confusion as to why. There is no injury. No fall down the stairs. You attempt to go about life and you suddenly cannot. Your limb is cold, blue, swollen, and unresponsive to your movement but everything that brushes past it feels like a thousand needles. You isolate, elevate, and protect it and it worsens instead of improving because you stopped using it just so the pain would cease some. At this point you might actually be seeing a doctor who likely has NEVER heard of CRPS. They send you for every scan, blood draw, and test there is. You get shoved off into physical therapy and told it’s in your head. At some point, months to years down the line, you finally hear about CRPS or someone mentions it. By now, if it has been long enough you may have whats called type 3, in which there are irreversible changes to the bone or limb and you cannot have a full recovery or it may have spread to more of your body, affecting your back, neck, or other limbs. You start medications. You are considered a chronic pain patient and your pain medicine that was the only thing keeping you going is put into question. You see, pain doctors usually refuse to prescribe pain medicines to anyone who has chronic pain because it means you’ll be on it forever and you’ll likely need higher and higher doses until you no longer can use pain medicines (WHICH IS A VERY VERY BAD THING). You are offered nerve pain medicines like Gabapentine or Lyrica (both of which can have long term memory loss, kidney toxicity, and cardiovascular failure). You’re handed anticonvulsants which can cause more psychological symptoms, send you into suicidal depression, give you allergic reactions, or hundreds of other side effects. And you’re told to say good bye to your old life. Grieve for it and move on.
That’s my reality. Now I’m not trying to be a Debbie Downer here, I am not saying all hope is lost. I’m just facing reality. I will improve over time and I could get back to some real “living” but I will always have limitations. I can’t just decide I want to go rock climbing or sky diving tomorrow because that sounds like fun and I’m in my 20s. I can’t just decide on a whim to crash at a friends house or stay out all night having fun- I have to go home to take all my medications and WATCH OUT don’t mix any of them with alcohol. Did I eat enough with the medicine or does it have to be taken on an empty stomach? Do I have back up medicine? Did I get a refill on time? I have to be aware, careful, and basically paranoid.
So, Station 19, I ask you, where is all that? Where is the reality that MOST of the CRPS population face? Instead of taking a well developed character with an interesting situation and showing us how he could overcome through therapy and hard work and medical intervention you’ve made him into a “hot topic” issue of drug abuse and made THAT the central point. Where is his conversation with his new wife of how things will be difficult because of this condition? That one day she may have to fully take care of him well before he should be geriatric care? Where is his conversation with his doctor or therapist about how he can overcome this or what his options are? Where are the countless, tear filled night of feeling so completely alone and burning in pain you would rather just die? Where is the checking off of every single box when they ask what type of pain you have and the registering nurse looking at you like you must be an addict or nuts? (Yes, this has really happened. You get a lot of questions when you have both dull throbbing pain and sharp electric pain) Where are the medication side effects you struggle to hide like memory loss, weight gain, irritation, vomiting etc.? Instead it’s all about his drug use and how that makes him a risk and danger to other people, not that is situation is cause by a REAL AND HORRIFIC LIFE LONG condition that will never disappear. You can’t just make him magically healed next season. You can’t just throw him into a burning building and have the affected limb fall off and he’s healed because his leg is gone.
Station 19, I need you to get it together for me. For us. I need you to make this character the pubic face of CRPS hope because most of us can’t even get out of bed to be that face. I need you to take a step back and evaluate your portrayal. I need you to raise awareness. The only orphan drug trial has been halted and there is almost zero chance we are going to get another treatment option unless someone puts this on blast. So for me, for the generation above me who never got help, for the undiagnosed people who lost the fight because it became too much or their bodies couldn’t take it anymore, for the children below me who could have a chance at recovery, and for the rest of the world that needs to gain some understanding, please, fix this.
-Jessie ~Living a Life on Fire
Life On Fire 