Wednesday, March 14, 2018

11 Ideas for What to Say to Your Chronically Ill Friend

          How often do you encounter someone who is hurting, either in person or on social media or through someone else’s report, and choose not to say anything because you are not sure what to say?

          A confession: I do this every single day, and I am not proud of it. 

          Lately I have found myself trying to be better prepared to respond to a variety of types of pain, including those I am less familiar with. It is okay not to know what to say. I think it is okay to Google what to say when you do not know. I think intentionality is often more important than spontaneity, and I think there is a way to be intentional and thoughtful while remaining genuine and authentic. I think saying something that you know is helpful is more important than being innovative and original. I think these matters are especially important when you are dealing with people whose pain you cannot relate to. I wish we would all be a little more intentional with one another.

          At the same time, I wish we would all be a little more willing to mess up. Sometimes when someone says something that they definitely would not have said upon a bit more thought, I can see them becoming embarrassed (and probably wondering if I am offended) when in reality all I want to say is, “You are so brave. Thank you.” Many people are simply not willing to put themselves in a situation in which they might screw it up. Friends, I cannot even give you a rough estimate of how many times I have said something I regret to a hurting person. The number is too high for me to conceptualize. Still, I believe the greater sin is the times in which I say nothing at all, refusing to take on a delicate conversation, prioritizing my own comfort over a friend’s need for support.

          Before diving into eleven concrete suggestions for what to say to your friends who are chronically ill, all of which are based on real and helpful things friends have said to me during what has admittedly been a pretty brutal year and a half, I also want to stress that illness is only one discussion topic of many. I am so, so, so grateful for conversations I have with people that have nothing to do with my illness at all. I am grateful for people who dream with me about what the future might hold, who share stories with me, and who see me as a whole person and not just a sick body (I have had lots of these conversations just in the past week, and they have been life-giving). It is not wrong to have a conversation with a sick person that does not involve illness at all, and in fact it is often a great blessing.

          In summary: Should you say something that directly addresses illness when you encounter someone who is hurting? In most situations, I think so. Should you be intentional about what you say? When possible, yes. Should you say something even if you are not sure if it is the right thing to say? Please do. Should all conversations with a sick person revolve around illness? Definitely not.

          Below are 11 suggestions for what to say to someone who is sick when you feel it is appropriate/necessary/important to address the suffering. This list is by no means exhaustive or representative, and every chronically ill person is different, therefore it is crucial to keep in mind that different people benefit from hearing different things.

1. "I don't know what to say."

          If there is one overarching life lesson that I have learned during college, it is that sometimes when you are struggling to know what to say, you can simplify this stressful internal dilemma by choosing to pause and name your concern out loud. “I am not sure if you want to be distracted or if you want to talk,” or “I want to help, but I don’t want to come across as condescending” or “I want you to know that I’m here for you, but I am afraid that I might be invading your privacy,” are all great ways to be honest and transparent about your intentions without having to worry about making a mistake, since power is surrendered rather than assumed in these situations. Admitting that you do not know something is empowering and relieving for everyone involved. “I don’t know what to say,” is always okay to say. I sincerely wish everyone would use this phrase more.

2. "I am free [on Thursday from 2 to 4]. How can I help? Would you like company?”

          Chronic illness is lonely. I have begun to recognize this truth as a fact rather than a judgment about my own coping abilities or circle of support. During difficult weeks, having friends to keep me company is often enormously appreciated but not something that I am willing to ask for when I am a walking disaster held together by joints and tendons that I am actively and involuntarily destroying. Sometimes it is literally helpful just to have someone who is willing to sit at a table across from me in the library, or to let me take a nap on their couch while they write a paper, or to invite me over to pet their dog. Company (and especially physical proximity) is so important when people are facing overwhelming circumstances, and it is so easy to offer. It also requires zero skills, and probably a lot less conversation than you might imagine.

3. "This is not your fault."

          When I started having to wear medical masks in certain situations as a component of infection prevention measures, what I did not know was that it would mean that whenever I did not wear the mask, I would blame myself when I came down with another illness. When I do too much one day, I scold myself when I wake up with painful joints the following morning. When I skip a nebulizer treatment because I don’t want to feel shaky, I beat myself up when I find myself struggling to move air in and out later. Lots of friends caught me in this thinking last year and reminded me that I am doing my best, that life is not always a simple game of cause and effect, that I am allowed to make mistakes, and that I cannot control every variable all of the time. I did not need grand moral reasoning or a debate about my agency regarding my illness to move past this destructive game of self-blame, I just needed someone to assertively tell me, "This is not your fault," and then I could move on.

4. “I will see you / I will check in with you [on Thursday]." 

          Last spring, when one of my professors told me at the end of class, “I’ll see you on Thursday, Rachel,” I almost burst into tears (true story). I did not know if I was going to make it to Thursday, and I did not know if I would be able to come to class or stay in New Orleans that long, even though it was less than 48 hours away. Just knowing that someone confidently believed that I could, and expected me to continue functioning as a student, was much appreciated. Similarly, letting someone know that you will check in with them again is a step that I think can be essential, especially if you are reaching out to offer help. When one of my Tulane classmates called me to see how I was doing and offered her help after a brain MRI/insurance company fiasco that left me quite flustered, I refused her kind offer and assured her that I was “hanging in there” (my favorite noncommittal, nondescript phrase). She did not push me, but promised me that she would call again two days later, giving me time to think about what I might need while also assuring me that she was not going to stop caring just because I did not offer her a way to feel helpful. Anything you can say that implies a sick person's presence in the future is typically quite good. 

5. "I'm on your side."

          You do not have to know what exactly it is that your friend is fighting to make this phrase work. Some days I am fighting my immune system, or an infection, or fear, or medical institutions, or doctors, or my insurance company, or professors, or medication side effects, or a world that is not always gentle towards hurting people. This phrase is a good way to cover all of those potential challenges and to remind your friend that they are not alone. When I first announced my decision to transfer, this phrase was a part of one of the first texts I received from a friend from home, and I still cling onto it today.

Hannah is a pro at distraction. I think sisters in general
tend to be great at this, but she is especially skilled.
6. “Would you like to hear my thoughts on [Say Yes to the Dress]?”

          Sometimes hearing all of the gossip is super beneficial to the burdened soul, and sometimes it is unbearably obnoxious when you are facing much more serious questions than what Leslie’s mom said to her sister behind her back about the mermaid cut gown. I think asking this question before diving into something typically considered to be “shallow” or “superficial” goes a long way (although please do not get me started on the sexism inherent in the popular usage of these words). I have answered this question with “Oh yes definitely, thank God, please start from the beginning,” and also with “I’m sorry, I can’t right now.” Trust your friend to let you know whether this type of chatter is appreciated or hated on a moment-by-moment basis.

7. “Would you like to come over for a movie night? I have blankets.” 

          Sometimes even sick people want to get out of their houses/dorm rooms - in my experience and based on hearing the stories of many of my friends with chronic illnesses, we often feel quite trapped, with nowhere else that we are welcome or no spaces willing to accommodate our need for electrical outlets, medication intervals, an accessible freezer, etc. I have been especially grateful for movie nights during my time in college, and even more grateful for people who prepare in advance for my fever chills (I feel like there needs to be a club for those of us who regularly run low-grade evening fevers). Movies are nice because they require minimal effort and allow a sick person to spend quality time with people even when we have very low energy levels.

8. “When you are feeling terrible, what helps?”

          One of my dearest UNC friends asked me this simple question last semester during a brief hiatus between surgeries, and I think it really speaks to the usefulness of asking preemptive questions rather than trying to rack someone’s drugged up brain for practical suggestions while they feel like death (although that is also appreciated.) When asked this question on a relatively good day, I was able to think of concrete things that I could not have thought of on a bad day. For example, I realized in the fall that on the days/weeks in which I was very ill, it helped to schedule meals with my friends. I did not necessarily need anyone to cook for me or to bring me food, but I was unmotivated to eat consistently and was losing weight, struggling to manage my illnesses, and becoming weaker as a result. Committing to meeting someone for lunch or going to the dining hall at a specified time with a friend motivated me to eat and made it impossible for me to skip a meal due to fatigue or a lack of appetite. The point here is that no one necessarily thought that just having someone sitting next to me and eating alongside me would improve my physical health, but it did, and I was grateful for a friend who asked this broad question during a not-horrible time and offered me the opportunity to recognize ways in which I could accept help. 

9. "I believe you."

          Sometimes I hesitate to say this to people because I am afraid that it inadvertently implies that doubt is the norm, but this is definitely a case in which I think the pros outweigh the cons, and is especially important during periods of time in which your friend may be managing a condition that is undiagnosed or not fully medically understood. If your friend has an invisible illness, I guarantee you that they often encounter people who express a range of levels of skepticism, even if all you see from the outside is the support they receive. A simple and well-placed “I believe you” can offer a disproportionate amount of hope and can serve as a way of marking yourself as trustworthy.

10. "Do you feel like you today?"

          Sometimes I do not have “good days” and “bad days.” Sometimes I instead divide my time into “days I feel like me” and “days I do not feel like me.” On Sunday, for example, I felt pretty bad, but I felt like me. My mom made me laugh and a minister helped me awkwardly put my coat on during a hymn and I got to see some of my favorite people and I laughed about reality television on the phone with a friend and I was able to work on several assignments. On the other hand, sometimes I am having a relatively good day with my health, but the medications enabling my good day leave me feeling like a whole different person, usually one who is much more emotional and frail and messy. I think “Do you feel like you today?” is a question full of grace in every way. 

11. "This is so much to have to handle. How are you holding up?"

          People often want to know how my body is doing, and sometimes that question can become a bit objectifying. Asking any sort of question that indicates that you are interested in more than just a person's physiology opens the door to a conversation that can involve illness holistically rather than focusing exclusively on doctor's reports or lab results. I am grateful for all sorts of conversations that indicate that people see me as more than my illness, and this category includes conversations that are about illness but refuse to reduce me to it. My point here is that by asking a more inclusive question, you can directly address illness while often avoiding unintentionally placing the burden of regurgitating a medical report on your sick friend. 

          I hope these suggestions are useful, but they do not have to be used. I think the bottom line is just showing people that you care consistently, intentionally, and thoughtfully, and that can certainly take many more forms than just this brief list. 

          We all have a long ways to go in learning to love one another better. At the same time, I am constantly stunned by how generous and compassionate the people around me are, especially during what has unexpectedly ended up being a difficult season of life for me since I started undergrad. Thank you for being willing to try. You are already succeeding.

Thursday, March 8, 2018

Me, the Mush

          I feel mushy.

          My joints have sort of felt like mush since Sunday night, and I have stretched my energy to its limit, to the point where I have genuinely worried about physically collapsing and my speech sometimes becomes slurred because I am too exhausted to enunciate and my thoughts feel like they must swim through a sea of molasses to turn into sounds. I also feel like I am scrambling to hold onto all of this love that people have poured out to me over the past two years and I do not yet know how to allow that love to lift me up rather than weigh down on me.

          Because of the chronic nature of my illness, even when I am not managing an acute health crisis I am still living in a body that seems way more fragile than the bodies of the people around me. When I woke up on Monday I ran straight to the bathroom and threw up, and given how much I had put myself through on Sunday, I could not even blame my body for its backlash. I gazed into my bloodshot eyes as I washed my hands. The stark paleness of my face took me slightly aback and I mumbled, "I'm sorry," to the mirror, apologizing to myself for demanding so much of someone so weak.

          When I returned to my room I discovered a sweet text from a friend I have not seen in a long time, reading, "Hey Rach! Something is wrong with your account - you wrote a comment that didn't make sense on a post from 2013, and you liked and unliked a 2014 photo three times a few minutes ago. It made me miss you more! What is going on at UNC these days?" Normally social media account issues like this are such a headache, and yet this inconvenient incident turned out to be an opportunity to reconnect with a friend I have been missing quite a bit lately. Somehow everything in my life seems to turn back to love, and it is really wonderful but also sometimes leaves me feeling immensely guilty. How can I ever give back all that I have received? How can I ever say "thank you" sincerely or frequently enough?

          So this is how today is going to go, I thought as I typed out a reply and placed a Zofran on my tongue. A rebellious body? Probably. Unrelated inconveniences? Perhaps. Undeserved love? Almost certainly.

          On Tuesday, after a hectic Sunday and Monday which were packed full of all sorts of activities back-to-back, I decided just to rest. I have never seen my mother as proud of me as she was when I revealed my intentions to take a break to her on Monday night. "That is great!" she said encouragingly, with way more enthusiasm than I had anticipated. This is probably not the reaction most mothers have to their eighteen-year-old daughters saying they have no plans to be productive, I thought, reflecting on all of the familial pressures my peers recount in the couple of minutes before each class starts, sacred moments of commiseration for overworked undergrads. My mom has been gently encouraging me to do less, but I love everything I do and all the people I get to interact with along the way, so I usually fail at this and then call her crying at least once per week because I am too exhausted to do literally anything and am wondering how I am supposed to live my entire life like this.

My sweet cat Brooke, who was not too happy that I was
trying to type out a Spanish literature essay while she was
trying to take a nap on my hand.
          In a miraculous deviation from my normal Tuesday routine, which typically involves capitalizing on my day of no classes by scheduling lots of unnecessary activities, I forced myself to stay in my bed even after I woke up, resisting the urge to go somewhere or do something. My cat and I spent quality time chatting about a variety of our favorite topics, including the futility of the cat-versus-dog debate and how ridiculous our puppy Dante can be, as she sprawled out her paws on my comforter, which, to her delight, was gently heated by the morning sun streaming through my windows. What does one do on a rest day? I asked myself, discontent with the idea of cuddling with my cat for hours on end despite how sweet she is. I decided that rest days should involve watching cycle 10 of America's Next Top Model, playing piano until the searing pain in my wrists becomes too much, and writing a Spanish paper. As the day progressed, I realized that I was likely coming down with an infection, but I did not admit any of the symptoms out loud until my mom directly asked me how I was doing later that evening after noticing my agitation. I nonsensically but genuinely thought that if I did not say anything the infection might take a hint and pack its bags.

         So here I am, once again fighting something that is quite adept at breaking me down (classic, right after I work up the courage to make a celebratory social media post about not having an infection). At its onset, I remembered that there was the possibility that this was just my severe seasonal allergies, especially since my lungs are doing their fun annual thing where they just stop working and I have to revitalize them with medications that make me shaky and dose me with a pinch of panic. I took Benadryl to test my allergy theory, but when this did not improve my symptoms at all, I was pushed further towards the upsetting realization that my most dreaded moment of the semester had arrived.

          As a result, my mom received another teary phone call (my specialty as a daughter) this morning after a doctor's appointment which finally confirmed an infection and left me feeling like we might be starting this cruel cycle all over again. Lots of people have proven themselves to be fully committed to making each day a little less exhausting for me by helping in every way they can, but I seem to be following a sprint-collapse-sprint-collapse pattern rather than adhering to the doctrine of the steady jog. I am thankful for friends and for parents who catch me in their arms without scolding me for my illogical pacing. They are the true saints of this world.

          "Two more days," my friend reminded me this morning, putting her arm around my shoulders when she witnessed tears of exhaustion well up in my eyes. "You can do this, my friend. Two more days and then you can rest for a whole week." I think I am more likely to collapse than to rest. Rest implies some sort of choice. It seems as though I could collapse for the entirety of spring break and still feel fatigued, but I was motivated nevertheless by the imposition of a finish line. I loved her for this sweet reminder, and for helping me to think just a little further ahead than pain allows me to unaided. "And don't schedule anything," she snapped. We laughed as I wiped away a few stray tears.

          I do not take for granted my ability to go to class this week, even though I am sick and my energy is just barely detectable. As some of you may remember from "Flying Home Early," last year I missed the entire week of classes prior to spring break due to laryngitis, severe allergies, infection, and poor airway function. When I realized that I needed to return to North Carolina immediately, I had to email one of my professors, who had the option to kick me out of his course due to my excessive absences and the participatory nature of the class. I was doing well in his course, and wanted desperately to stay enrolled, but I was too sick to allow this to be a deciding factor in my decision to come home. I already had my plane ticket. I was completely at his mercy. I sent an email begging to remain a part of the course but promising my understanding and respect of his decision regardless.

          "I am sorry you are struggling right now," he wrote back quickly, "... rest assured that I will work with you." I cried silent tears of relief reading this email from the New Orleans airport, tiny droplets that soaked into my medical mask and made me cough a bit. Living with a chronic illness means living with so many moments of having to show people how imperfect you are, whether through a humiliating email admitting that your body is failing in every way or curled up with a mask on in an airport terminal with no one sitting closer than five feet away from you. I do not think that having arthritis is a gift in the slightest, but this repetitive experience of having to humble myself and be my most broken in front of people certainly is, even though most of the time I do not appreciate it until long after these embarrassing moments pass. There is nothing more frightening, and there is nothing more human. My body forces me to abandon the illusion that I have it all together. The same condition that traps me frees me to see the very best in people, to view them in their most kind and accommodating and gentle and encouraging moments. Constant physical reminders of my own fragility remind me that my life is a dandelion that could be carried away by the smallest gust of wind at any moment, and so I try to live a little more meaningfully than I might otherwise.

          As you might expect, I have been reflecting quite a bit lately on the past year and all that it has entailed. On February 15th of 2017, I submitted a transfer application to UNC Chapel Hill. One part of this process that I only shared with a few of you, and just briefly mentioned in "Coming Home to Carolina", was that my plan was to spend my entire sophomore year studying maternal health as an exchange student in Amsterdam. I applied to my program, met with study abroad advisers, created an academic plan and timeline, submitted a research proposal, and was accepted. I was looking at Dutch dorm rooms and apartments and my family and I were planning when they would visit me in Europe. In the spring of 2017, I was enrolled in advanced public health courses that I did not even have the prerequisites for in preparation for my year abroad. This grand adventure was financially possible thanks to my Tulane scholarship, and I could not have been more excited. My dear roommate covered our dorm room in index cards with Dutch vocabulary. I became a Duolingo Dutch pro and learned many simple sentences. I scoured the Internet for possible church services that I could attend once I was there. Studying abroad for a full academic year was a dream I had been clinging to since middle school, and I was so excited that it was finally becoming a reality.

          As you can imagine, by mid-February/early March of 2017, when I was hearing terms like "thirty percent airway function" thrown around despite having two or three nebulizer treatments a day, and was constantly on steroids to try to curb the inflammation taking place all over my body, and was receiving "full allergy cocktails" that included literally every antihistamine the student health center had swallowed at once in an attempt to raise my blood oxygen levels, I knew, even before I could confront the reality, that Amsterdam was off the table. I started screening calls from my study abroad program. I stopped worrying about paperwork and legal hurdles. I was too focused on my lungs and the rest of my collapsing body to fool myself into the notion that I would spend a year traipsing around Europe with all of my new Dutch friends. I was angry with myself for ever thinking I was healthy enough to do this, but I did not even have the energy to stay mad about it because I was so consumed with trying to figure out where I would spend my next three years of undergrad, a decision I thought I had made in 2016. I realized that my college experience would likely involve a lot more staring at tile ceilings and breathing slowly through a medical mask than adventuring through countries and continents in impressive academic pursuits.

          This was the hierarchy of my plans for sophomore year: go to the Netherlands, stay at Tulane, and transfer to UNC. Transferring to UNC was my worst-case scenario, my fallback so that I would not end up in a situation in which I would be forced to withdraw from college altogether due to my medical inability to spend another year in New Orleans. Looking back, I am grateful that I had the foresight to think of this back-up option (although I thought of it less than a week before applications were due, which was as inconvenient at it sounds), and even though the whole process of admitting that I might be falling apart in a way that made my life unsalvageable was excruciating, my body was breaking down enough that no one asked me to justify my decision once I revealed in April that I was transferring. A couple of days ago, I was expressing to a Tulane friend whom I adore that I missed our campus, our friendship, and our time together. "Rach," she said tenderly, after a lengthy pause, "You were so sick." I could hear her voice tighten as she became emotional and admitted, "I was so afraid for you." Sometimes I need this reminder that my life in New Orleans was not as perfect as I make it out to be when I am missing the life I was forced to flee. Sometimes misery deserves to be remembered.
I flew home for Easter break just a few days
after announcing that I was transferring to Carolina.
I got home around midnight and sobbed while my
mom hugged me because I did not want to transfer. I
went upstairs to my room and found this sweet gift -
a brand new Carolina pillow, along with a UNC water
bottle and shirt. My parents are the sweetest.

          The combination of thinking a lot and having an infection has made me extra mushy this week. Sometimes I can disguise my mushiness for a few hours, like sticking Jell-O in a freezer, but I always thaw eventually, and then I am just as emotionally squishy and liable to become shapeless at the gentle squeeze of a hand as I was before. Sometimes my mushiness makes me weepy and overly sentimental and gives me this simultaneous short-term and existential awareness of the importance of loving one another and of saying out loud or putting down on paper all of the nice things we think about people. Joint pain, nausea, infections, allergies, and fatigue all increase my base level of mushiness. Of course, this is not always outwardly reflected, especially when I am in significant pain. Like any human, I can be distant and irritable and quiet and snappy when I am not feeling well. And then, of course, I feel horrible about myself, for not being a decent human being and for not matching up my actions with my mushy inner state, even though I am also trying hard not to be too mushy. As you can probably tell, this is an exhausting endeavor.

          When I am trying to feel less mushy, it helps to freak out over reality television, and it helps to lament that Peter was not the Bachelor (the greatest injustice of our time - Peter, if you're reading this, please marry me). It helps to unnecessarily stress out over my course registration, and it helps to go to the mall and spend an hour picking out a single pair of heels. It helps to talk about concrete, trivial, and pointless things that non-mushy people have the privilege of filling some of their time with, and it helps to re-watch the clip of Kim Kardashian losing her earring in the ocean five times in a row. It helps to blast BeyoncĂ© from my car speakers, and to roll the windows down and sing along even on chilly days. It helps to laugh at Ellen videos while I am nebulizing or sticking needles into my stomach, and it helps to giggle over Vine compilations in the library with my friends at 10 p.m. It helps to spend a solid five minutes chatting with a Target cashier about winged eyeliner and it helps to gossip about the British monarchy with strangers in Barnes & Noble.

          Of course, I am perhaps even more grateful for the people who step into a world of mushiness with me, who bravely reveal that they are Jell-O, too. I cling onto these people because they become strongholds I know I can turn to when the whole world is crashing down, people who feel or have felt that same humbling brokenness and unrelenting pain. Over the past two years, I have found myself needing the friendship of other people with chronic illnesses more than ever before. I am only just now discovering that there are elements of this fundamentally flawed state that are innately human enough to encompass people who have had all sorts of tough experiences, not just those who have suffered from physical illnesses. There is much more companionship in the world than I previously imagined. What a beautiful discovery this has been.

          I am a hot mess today, with a burning throat and ears that feel like they are submerged in water and lymph nodes that are swollen and an appointment that overwhelmed me and a prescription for antibiotics that makes me want to cry and classes that I do not feel like attending and a body that just wants to lay down and a soul that is still mourning the loss of Amsterdam and New Orleans and stable health. I could try to toughen up, but I think for now I will just stay mushy. My doctor, my nurse, my professors, my parents, and my friends have all met me where I am today, offering kindness and hugs and meals and validation and rides and memes. I hate existing in the mushy space. It makes me feel so broken and honestly, it sometimes makes me feel worthless, like a weak soul existing within a trash body that just cannot seem to understand that it should be redirecting the energy it devotes to attacking itself to fighting the infections that seem to overtake me so easily. But I cannot be anything else today, so I will try again tomorrow to be a bit sturdier, and hopefully that determination will be enough to guide me through.

          If you have pulled yourself together today and are putting on a brave face for the world, I commend you. And to the crumbly and the mushy and the melting, and the weepy and the grieving and the fearful, and to all of you who have had to come to the tragic realization that at some point your life as you planned it became unsalvageable, I am with you.