Saturday, January 23, 2016

January Gratitude

     The past few weeks have not been the best, but they also have not been the worst. The first week after winter break, I missed five classes because I was feeling so poorly. It was absolutely awful, because I was in pain and behind in my classes and lonely. Luckily, I am feeling a lot better now, although I realize that my energy and milder joint pain may be short-lived. I ran 2 miles yesterday, which is a huge accomplishment considering that there is a wheelchair sitting in the backseat of my car just in case I need it. Of course, I am paying for it now with ice on my knees (conveniently collected from my back porch, thanks to the wintry weather NC is currently dealing with) plus rheum-y hips and ankles, but it was well worth it and I am hoping to run again sometime in the next couple of days. The ultimate goal is a half marathon, but I realize that might be a bit ambitious.

      Despite feeling sort of defeated during my time out of school, I also felt uplifted by the support I received from friends, teachers, and family members. So instead of detailing the pains of the last few weeks, which would be sort of sad and would involve capturing, in writing, many moments that I do not wish to relive, I would like to highlight some of the beautiful things that have happened. Arthritis has allowed me to experience compassion and humanity in ways that I never expected, and for those who have shown me this unconditional kindness I am very grateful.

     I am thankful for friends who still want to hang out with me when I am at a low point. I am thankful for friends who send texts and call me during their lunch periods to ask how I am doing, even when they know that I will likely lie to them. I am thankful for friends who help me make up the work I am missing, because I know that trying to explain two classes worth of material to someone who can barely focus due to the pain is not ideal. Over the past few weeks, I have found myself especially grateful for Faith, Spencer, and Amelia.

     I am thankful for parents who joyfully celebrate with me when I am feeling okay for the first time in forever on a Friday night, but who do not express frustration with me when I wake up sick on Saturday. I am thankful that they trust me to know when my body is capable of going to school and performing basic activities and when it is not.

     I am thankful for teachers who encourage me to rest when I am not doing well, and who make a point of letting me know that they are glad to help in any way that they can. I am thankful for teachers who walk me to class, and who unquestioningly allow me to discreetly exit the classroom when my medications result in morning and midday nausea. I am thankful for teachers who believe me when I anxiously remind them that I am dealing with a chronic illness, not skipping their class. I am thankful for teachers who maintain high academic expectations of me.

     I am thankful for a church that is comfortable with the reality of living with a chronic illness, and where I am surrounded by people who do not think any less of me during my flares. I am thankful that I am not suffocated by theology that passively blames me for the condition my body is in.

     So although I have found myself in an incredibly frustrating amount of pain over the past few weeks, I have also found myself astounded by the generosity of the people I am surrounded by. Your kindness does not reduce the swelling in my hands or cease the relentless pain in my hips, but it does remind me that I am strong enough to continue on even when the flares seem to consume me like quicksand. Thank you for your empathy, and I promise to do my best to return the favor. 

Saturday, January 9, 2016

Why My Chronic Illness Demands Feminism

1. My pain is not taken as seriously as a man's pain.

     Women are generally viewed by society as weaker and less "tough" than men. This is absolutely detrimental to chronically ill women. I am by no means the toughest person in the world, but I am tough. When I say that I am in pain, I mean it, and I need to be taken seriously, because half of the battle of living with an invisible illness is just being believed. Doctors are more likely to assume that women are exaggerating their pain, or that they are simply responding more dramatically than is appropriate. Because autoimmune diseases affect more women than men, drilling in the message that women are capable of knowing when the pain is too much is critical to my overall health and wellbeing. When I need pain medication, I need pain medication, and I should not have to prove that I am "as tough as a man" to request this, because my strength is not something that is up for debate or comparison. I should not have to force myself to hold back tears in the rheumatology clinic out of the very real fear of not being taken seriously by medical professionals due to the femininity attached to crying. On the other end, men should not have to hold back tears in rheumatology clinics or in front of friends out of fear of being accused of lacking masculinity. Tears are a signal of pain, and a natural result of pain, and they need not be attributed to particular genders. Everyone deserves to have their pain taken seriously. My chronic illness demands feminism because if my pain is not taken seriously, then my treatments will always be inadequate and I will lose a crucial pillar of support.

      For more information, read: How Doctors Take Women's Pain Less Seriously from The Atlantic. It's a long article, but the woman discussed is named Rachel, so it is meant to be. Also, it uses a lot of statistical information and cites relevant, dependable sources.

2. My healthcare is in jeopardy. 

     With the United States Senate recently voting to defund Planned Parenthood and repeal parts of the Affordable Care Act, it is painfully obviously that the health of women is not a priority for our legislators. The reality is that one in five American women will visit a Planned Parenthood clinic at some point in her life, and there is no reason that I could not end up in that twenty percent, for a variety of reasons. Planned Parenthood provides a plethora of important health services for women, from contraception to STD testing to abortion. The fact that our government has claimed the right to limit the healthcare options of women is appalling to me, and I am tired of fighting for my right to make decisions about my body.

     Additionally, the Affordable Care Act (Obamacare) is the primary reason that I will be able to have health insurance as an adult. When I am no longer eligible for insurance under my parents, I will be able to get my own health insurance due to Obamacare's elimination of discrimination against patients with preexisting conditions. I am currently on a $24,000/yr medication, so there is no way that a health insurance agency would ever have accepted me and covered my needs prior to this mandate. I am thankful for the peace of mind I have knowing that I will be able to receive the treatment that I need. My support of the Affordable Care Act is not only political, it is deeply personal. My chronic illness demands feminism because nondiscriminatory health insurance is the only way for me to receive the medical treatment I need. 

3. Society assumes that I am not capable of making medical decisions for myself. 

Amelia & I wearing Planned
Parenthood and gender equality shirts
     Going along with my support of Planned Parenthood, I find it to be utterly ridiculous that so many people think that I am incapable of making a reproductive health decision for myself. If I am incapable of decisions like these, how could I be capable of making decisions about biologics, or DMARDs, or any other rheumatoid arthritis treatments?  I am a woman, I am competent, and I need feminism to drill this point in. My chronic illness demands feminism because if I am not treated as someone who can fully understand the implications of my decisions then my opinions about what is and is not working for my body will be disregarded by medical professionals and the people around me.

4. Autoimmune illness clinical trials are often male-dominated, even though most autoimmune patients are female. 

      The information written below was taught to me by my dear friend Amelia. Despite the fact I stated earlier, that rheumatoid arthritis/autoimmune diseases affect more women than men, most of the clinical trials that evaluate the effectiveness of new drugs are male-dominated. We can do better than this. Including women in clinical trials is crucial, because the drugs will be given primarily to women once they are approved. Sometimes women's bodies react differently to drugs than men's bodies, therefore testing medications on women as well is an important step in discerning these differences and evaluating the effectiveness of the drug on a population that is representative of the patients to which the drug will most often be administered in a prescription setting. Additionally, the cells used to develop the drugs in the first place are almost always biologically male cells, because female hormones make for more complex research. In my view, women are worth it. My chronic illness demands feminism because I need medicine that is catered to and works for women.

5. Women with disabilities are more likely to experience domestic abuse. 

     Women with disabilities are almost twice as likely to be abused by a spouse or partner as healthy women. Of course, one in four healthy women has experienced abuse perpetrated by their spouse or partner, so both of these levels are ridiculously high and must be addressed immediately. Women with disabilities are often less able to respond both physically and verbally to abuse due to their health conditions, and women's shelters and other resources for women escaping abusive relationships are often not properly equipped to take in women with disabilities. Women who depend on their partners to administer crucial medications sometimes experience the withholding of these drugs as a form of abuse, and sexual assault occurs frequently.

     Women with disabilities are also less likely to be believed when they report abusive partners. Their partners are seen as sacrificial for "giving up" part of their lives to care for their disabled loved one, and so this abuse is often assumed to be whining on the part of the woman rather than a dangerous relationship. Additionally, women with disabilities, even those that are purely physical, are generally viewed as less mentally competent and are often assumed to be hypochondriacs. When they speak out about abuse, doctors and friends frequently assume that they are being dramatic about minor conflicts rather than being vulnerably honest about a harmful situation. Feminism demands that women be believed when they report abuse and that they be provided with the proper resources before, during, and after abuse occurs. Feminism also demands that men treat women like human beings, which seems to be an incomprehensible concept for many. My chronic illness demands feminism because abuse should not be a part of any relationship I am in.

6. LGBTQIA+ women have a harder time finding medical professionals to treat their conditions. 

     As an intersectional feminist, I support all women. No woman experiencing an autoimmune condition should have to worry about what any medical professional thinks about her identity or relationships. She is entitled to doctors who treat her equally and hold absolutely no bias against her. Women have the right to be called the pronoun of their choice. Every woman has the right to bring her partner of any gender identity to appointments for support without having to worry about her doctor judging her, treating her differently, or condemning her, either silently or vocally. Additionally, no one should have to hide a part of who they are in order to receive comprehensive treatment for autoimmune conditions or for any other illnesses. My chronic illness demands feminism because everyone deserves to feel as comfortable as I, someone who identifies as a heterosexual, cisgender woman, do telling their doctor who they are and who they love.

Sunday, January 3, 2016

Choosing Softness

      Supposedly there are a bunch of stages of grief that everyone experiences at some point after their diagnosis. I never consciously considered this as I attempted to process what was medically happening to me, but I don't think it is the worst theory in the world. However, I have never (or very rarely) experienced the second stage, anger, as a result of my health.

      I certainly think it is normal to feel angry when something tragic happens. I do think that illness is tragic, especially when it is severe and when it forces major lifestyle changes. Of course, I know that anger is the result of many other types of tragedies as well. I think it is okay to be angry, and I am not condemning anyone who is. You are allowed to be angry, and no one has the right to be upset with you for it. Anger is a healthy part of life, and to be as cliché as possible even Jesus flipped some tables.

      I feel like I have never really been prone to anger. I rarely go beyond the point of frustration. When someone else does something or says something that is really, truly awful, I feel much more sad than I do angry. More than anything, I feel disappointed and confused. I wonder why people do hateful things and my heart breaks at the complex injustices that exist in this broken world. In many ways, my hesitance to become angry is a flaw of mine. Sometimes it causes me to blame myself too much, and sometimes my anger would be justified, and sometimes the result of my sadness is to avoid everything instead of confronting it. There is no question in my mind that anger is holy, and I wish that I used anger more to make noise about the problems I witness. I wish that when I overheard insensitive jokes in my Spanish class or in the media I could get mad inside, a righteous sort of fury that would lead me to call people out more than I do. I wish that when people said things that upset me I could yell instead of cry. But I can't. I am just not programmed that way. The millions of cells in my body flock to sadness in their reactivity much more easily than they claw their way to anger.

      Sickness scares me. I fear what arthritis is doing to my body. I fear swollen joints, the outcome of medications, and too many blood draws. The thought of still having to see a rheumatologist every three months when I am fifty horrifies me. I do not feel prepared to fight this battle. I don't even feel like I'm fighting a battle, because honestly all of this war rhetoric just seems like a glorification of what is actually just the immune system of one petite girl from North Carolina going awry. When I see people older than me dealing with similar conditions, I am grateful for their presence but I simultaneously feel overwhelmed by the challenges I will likely face in the future. It is not the end of the world, and I do not plan on stopping anything because of my health, but I am scared nevertheless.

     I fear what arthritis is doing to my body, but I fear even more what it might do to my mind. I fear losing friends when I am going through a flare, and I fear that people will treat me differently once they know about my illness. I fear that the pain will drive me to insanity, and I fear becoming bitter and angry.

     I fear becoming angry.

     I would rather be soft than tough. I would rather weep than scream. I would rather dissolve into tears than be numb to what happens inside and outside of me. I would rather hurt terribly than shut out the world. I am actively choosing softness, because I do not want to be cold and hard and bitter. Choosing softness is difficult a lot of the time, but I genuinely believe that it is worth it. The process of desensitization is one I actively fight against. Being soft, and feeling intense sympathy for the people around me, is what motivates me to make the changes I feel our society so desperately needs.

      This year, I am working on an independent study at school (basically a class that I design one-on-one with a teacher adviser) entitled, "Religion and the Holocaust." Every B day, I read about the lives stolen by German fascism, and I fear that the statistics about the number of deaths in each camp and the videos of starving prisoners walking to the barracks soon will not startle me the same way. In some ways, I think that the most important part of my study is feeling the pain every time I encounter it instead of creating a callus in my mind. I knew from the moment I decided to take the course, which was in a hotel room in Poland after visiting Auschwitz, that I was going to be as soft as possible the whole way through, and that I would never allow myself to speak of the Holocaust nonchalantly or impersonally.
Wilted Flowers
Photo taken by Kayla R-P

     I suppose my determination to choose softness is one of the things that compels me to work as a chaplain at some point. A few weeks ago I heard a few people talking about the death penalty in a very cruel and inhumane way, and just a few nights ago my friend told me about jokes regarding AIDs that were made in a play she went to see. When I hear things about people being imprisoned, whether it is by a flawed legal system or by their failing health, my heart breaks. Except that's the thing; it doesn't exactly break. It does not feel like it is in a million pieces that I must rush to put back together. My heart wilts. It droops and feels lifeless and wonders what it will have to do to stand back up again.

     Maybe I am feeling way more pain than is necessary by choosing softness, but for now I will keep weeping and dissolving and being an obnoxiously mushy person. After all, it is what makes me human.