Thursday, February 16, 2017

Three Lessons from a Sick 17-Year-Old

       My health has been uncontrollable, unpredictable, and honestly just downright atrocious over the past few weeks, but I thought that instead of delving into all of the details of everything that has been going on I could share a few things that I have learned through dealing with my chronic disease over the past few months. From the Never-Ending Strep Throat Crisis of the Fall 2016 Semester that we managed to solve surgically over winter break to whatever is attacking my system right now (acute? chronic? both?), I have certainly been thrown into a steep learning curve with my health. Below you will find three ideas that I have learned and accepted over the past few months. Perhaps I will change my mind about these later. Perhaps these are ideas you are already familiar with. Perhaps you do not agree with my takeaways. Perhaps they are not relatable for you. But I am sharing them in the hopes that perhaps they will make a few people feel a little less alone.
The visual result of a self-injection
gone wrong, which unfortunately feels
 very symbolic at the moment.

1. I am allowed to not know what to do. There is no universal handbook for dealing with polyarticular juvenile rheumatoid arthritis and its complications. Yesterday I found myself Googling "how to make tough decisions," and that is when I realized that absolutely no one has any easy method for determining what the right answer is for some of life's hardest questions. People write whole books on these things and dedicate their academic careers to determining the psychology behind it, and still no one seems to agree. We're all just living based on our best guesses and trying to figure out which options will hurt the least. I am no different, and I am not alone in making my decisions, even if they are ultimately up to me. I am allowed to stand in the shower motionless for ten minutes, unsure which droplets of water on my cheeks are from the showerhead and which are from my own eyes, and still not know. I am allowed to shampoo my hair twice because my brain is foggy and I am distracted by my own thoughts, and I am allowed to cry again because shampooing twice hurts the joints in my fingers so badly, and I am allowed to wrap myself up in the fluffy peach towel my dad bought me this weekend, and I am allowed to still not know. Moments like these are a normal part of decision-making, especially when the decisions are of greater consequence than which salsas to choose at Chipotle (always mild and hot by the way, never medium).

2. Frustrated doctors may invalidate my symptoms, but that does not mean that my symptoms are invalid. As an eleven year old who was repeatedly told to see a child psychologist for my pain and who was dismissed by rheumatologists until an ultrasound literally showed fluid in my joints and my diagnosis was confirmed, I became endlessly stressed and frustrated by doctors who insisted that all of my symptoms were in my head. The more upset I became by their false assumptions, the more they clung to these assumptions as an explanation for my distress. I tried to go stone-cold at appointments and started downplaying my symptoms in hopes of being taken seriously. I learned that if you try to play the game this way, nothing works.
     Luckily, after I received a diagnosis this obnoxious "you're just stressed" false narrative disappeared for a long time. Of course, I had to deal with (and am still dealing with) all of the emotional impacts of dealing with an incurable disease that causes constant and widespread pain, but sorting all of that out became a lot easier when the emotional symptoms were realized to be products of my disease rather than causes of my symptoms.
     I had a disappointing rheumatology appointment yesterday in which it was suggested that most of my recent symptoms, particularly my nausea, could be attributed to stress. This determination was made because I shed literally three tears when describing the ways in which debilitating fatigue has been negatively impacting my quality of life lately.
     I refuse to buy into the idea that I am not allowed to express any emotions in front of my providers. I want them to understand how upsetting it is to have to miss out on activities I enjoy because my body won't allow me to undertake them. I want them to know where my quality of life stands so that we can make positive changes to my treatment plan. I even want them to know how stressed my health issues make me, so that resolving them quickly and efficiently is viewed as a priority. While I was initially very upset by the outcome of this appointment, I feel so much more empowered and determined now than I did at eleven years old. I know that my symptoms are not attributable to stress. My parents know that. My rheumatologist at home knows that. My doctors at Tulane know that. My friends know that. If one rheumatologist wants to essentially medically punish me for being a human being, then that is his loss as a provider, because it is not something I will stand for. Of course, this is easier to say now that I am eligible to see adult rheumatologists (17 is close enough) and can fairly easily find a new one, but I still think it is a valuable lesson, and I hope that it is validating to any of you who may be struggling with this common medical predicament yourselves.

3. I am in charge of my treatment plan. During this same rheumatology appointment yesterday, I was advised to stop one of the medications that keeps my arthritis to a manageable level. After discussing this with my mom, we agreed to cut it in half instead. Previously, I thought that not following doctor's orders meant that I was an uncooperative, undesirable patient. Now I realize that I should always be offered options by my physicians and that my providers should expect me to be educated and empowered. I will never lie to my providers or blatantly disregard them, but I will be an active participant in my treatment plan, because, after all, it is only me who has to live with the consequences of whatever treatment plan I choose. Patient-centered care is a right, not a privilege.

    I wish I could say that I am feeling hopeful and positive at the moment, but, despite learning these lessons, I am not. I am feeling frustrated with rheumatology and frustrated with almost seven years of disease. I am feeling frustrated with decisions I have to make and frustrated with the feeling of powerlessness that has swept over me. Most of all, I am feeling frustrated with the ways in which my illness is directly prohibiting me from having a normal, healthy college experience. I continue to be grateful for all of your thoughts, prayers, and words of encouragement.

1 comment:

  1. They found regional brain blood flow of a part of the brain believed to be highly associated with pain processing, the thalamus, was abnormal in fibromyalgia patients compared with the blood flow in this brain structure in non-fibromyalgia patients fatigue syndrome


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