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.

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