Saturday, July 22, 2017

How Nausea Teaches Humility

      Somewhere between one and four times a week, depending on the week, I wake up between 3 and 6 in the morning with extreme nausea and am up for at least an hour before it subsides enough or my stomach empties enough for me to go back to sleep. I do not appreciate anything about these horrid hours, but I have recognized lately that nausea has taught me humility more than any other aspect of my disease. 

       It is impossible to feel superior to anyone when you spend multiple hours a week throwing up and wondering when this cycle might end. Did someone get 2+2 wrong? I can laugh at them all I want, but at 4 a.m. that person is likely snuggled up in their bed while I am struggling to hold down sips of water. There is nothing "strong" or "brave" about it. These are some of the most hopeless of moments, when the whole world feels like it might crumble around me and I wonder how it is even possible that the sun will rise again and life will carry on. It is one of the loneliest experiences of living with a chronic illness, yet unlike at other times of intense pain, I never wish that anyone was there with me. Nausea feels like a storm I must weather on my own. It is my personal fight, where my army of family members, friends, and doctors have all retreated to get some rest and I must go back out to brave a beast that wakes up before anyone else. I receive so much help with almost everything else that I feel like nausea is my own battle, and so I give myself the pep talks and make the medical decisions and allow Zofran to dissolve on my tongue without anyone to cheer me on. 

      In high school, on some of the days when I could barely walk as a result of the arthritis in my lower limbs, my friends or teachers would often accompany me on the short walks between my classes, most importantly because I could not handle any administrator or other teacher accusing me of sluggishness or trying to help but accidentally overwhelming me. Even though I should have just used the wheelchair (story of my life, honestly) there was something triumphant about reaching my destination. Even calling it a "destination" really brings to light how screwed up this mentality was; for everyone else, it was just their "next class." When I would hobble into a classroom, exasperated, people would comment on how proud of me they were or how much they could see that I was trying. While this often felt condescending and inappropriate (look up inspiration porn if you are unfamiliar with the term/concept), it was still better than them thinking I was lazy or apathetic. If I stayed home sick or used the wheelchair, would they still think I was strong? Would they think I had given up? Was I ready to give up?

     The thing with nausea is that there is no triumphant moment or destination. There is only a moment of feeling well enough to curl up in the fetal position, unable to distinguish which tears in my eyes are from throwing up and which are from crying, and squeezing my eyes shut with the hope of sleep. I do not feel like a warrior, I feel frail and broken and small. I do not feel like fighting or wielding a sword. I feel like crying. No one will ever know how much strength I do or do not display during each night of sickness, and so I am only as strong as I want to be. "Hold it together," I think, but this time for my own sake rather than for the sake of someone else. I'm never trying to prove my courage when I weakly leap up from my bed, twist my tangled hair up with a clip as fast as my fingers can manage, and grasp porcelain with cold palms, unable to hold my head up otherwise since I am dizzy from having rushed out of bed. But I do have to be strong, so that I will get through the episode efficiently without completely losing my mind. "It'll be okay," I tell myself, resting my head against my cabinet and closing weary eyes, "it'll be okay." I only believe myself half of the time. 

     This is not a pretty or poetic post. I am keenly aware of that. These are the unfortunate details of chronic illness that are painful to write but that I believe are important to share, because I am trying to portray chronic illness and the ways in which it affects me on an individual basis accurately, authentically, and thoroughly. I have not written about nausea much mostly because the timing of my nausea makes it easy to hide. I hope that exposing my very regular struggle with nausea today does not scare anyone, but if it does scare you, know that you are not alone, because it scares me too. 

      I would never wish this disease or any of its symptoms on anyone. One time during middle school I prayed for someone to understand what it was like and then demanded that God shred my request a few weeks later, afraid that my prayer would be used to justify giving some other little girl arthritis. I thought about this hypothetical girl often and became panicky whenever anyone around me complained of a sore wrist or a stomach virus or a minor autoimmune issue. Was this the person I had doomed to a life a rheumatology appointments, home injections, and joint swelling with my selfish prayer? This was terrible theology and looking back I know that my prayer was free of malicious intent, but I felt guilty about it for years. I hope that you never experience a serious health issue, but I also hope that you have something that makes you feel completely inferior to everyone around you. As terrible as the feeling is, it sure does make you care a lot. And it sure does put things in perspective for you, even if you would rather that perspective not come in the form of a torn up stomach in the wee hours of the morning. I hope you will use feeling small to give a lot of love to the people around you. I hope you realize that sometimes the smaller you feel the bigger your heart is. 

Sunday, July 16, 2017

How to Be a Friend to Your Sick Friend

      While participating in #CreakyChats a few days ago, we were invited to dish out some of our best chronic illness pro-tips. Normally I think very carefully about my responses before tweeting, or I just listen to most of the #CreakyChats conversation, but when asked for a tip this one immediately came to mind:

       When I first Googled my illness after being diagnosed, I remember reading from multiple bloggers that my disease would help me to "know who my real friends are," and that my social life would sort of flip upside down. I was pretty skeptical of this. I knew I would probably grow apart from my friends - I spent most of my afternoons at physical therapy during the first few years of my illness, not hanging out with my peers after school, and it became somewhat impossible to relate to other pre-teens who were not constantly thinking about the amount of fluid in their joints or their next rheumatology appointment. What I did not expect was that all of those bloggers were right. People you are not even that close to become the most reliable friends in the world, and the people you used to cling to often prove to be unequipped and sometimes unwilling to offer support. Of course, there are people I don't know well that are not kind at all when confronting chronic illness, and there are people who I know well who are absolutely lovely when dealing with what can be a sensitive subject. All I am saying is that you cannot predict these things ahead of time, no matter how well you think you know someone.

       The good news is that having a chronic illness often allows me to see the best in people, whether they are a close friend or a stranger helping me to reach something in a grocery store when my elbows will not fully straighten. More importantly, I have been surrounded by friends who love me and care for me even when I feel more like arthritis than like me.

Sisters are the best friends of all!
      Since that #CreakyChats, I have received a few requests via Twitter DM for a blog post about the best way to be a friend to someone who is sick. Even just receiving requests like these gives me so much hope for the future. People want to help, and that is a reality too wonderful to be taken lightly. I have been working on developing a little list that I hope is not too overwhelming. As always, I advocate for speaking with heart over saying the "right" things, so do not fear if you find yourself existing in a space outside of these suggestions.

1. Ask what your friend needs, or offer specific suggestions. 

       While "I'm always here for you," and "Let me know if you need anything," are meaningful displays of love, they can also feel a bit obligatory and it can be difficult to discern who is being sincere by saying this. It is better to ask a specific question when possible. "Would you like me to go with you to an appointment?" or "Would an ice pack help?" or "Do you need someone to keep you company right now?" all come across as more genuine and less ambiguous. If you can't find an appropriate question that is that specific, you can ask, "What can I do to support you right now?" or "What can I do to help?" Both of these are better than "Let me know how I can help," and open up a conversation rather than closing one down.

2. If you're not sure, it's okay to ask. 

      I think one of the biggest obstacles that prevents people from being a friend to people who are sick is uncertainty. Will talking about your friend's illness be helpful to them or a source of frustration? Does your friend want to go on a hike or is she too unwell to go? Would bringing a homemade treat be appreciated or is your friend feeling too nauseous to eat? I have great news for you: you do not have to (and should not) figure these things out on your own. You can literally just ask, and 99% of the time it is not awkward at all, it is only appreciated. For example, asking, "Would a hug help or would it hurt?" is better than not offering a hug at all, and asking "Would you like to go ice skating? I'm not sure how painful it would or wouldn't be," is better than not inviting your sick friend. Plus, by admitting that you are unsure of the right course of action to take, you offer power to your friend and acknowledge her illness in a direct and confident manner. All good things.

3. Learn about your friend's illness. 

      Google exists so at this point there is really no excuse for not reading up a least a bit on your friend's illness and how it affects her. If you are not sure where to start, or if you want to strategically avoid misleading or inaccurate websites, you can even shoot your friend a text like, "I'd love to read up on [juvenile arthritis] to be a little more informed about it. Are there any websites you recommend?" This is both thoughtful and direct. The more you know, the more you will be able to offer, from both a practical and emotional standpoint.

4. Offer alternatives when illness stops plans from happening. 

     Something that most of my friends with chronic illnesses agree on is that canceling plans with friends due to illness is one of the absolute worst feelings in the world. I remember being so excited to go shoe shopping at the mall with a friend once during my freshman year of high school, only to wake up feeling like trash. "Let's watch a movie instead," my friend texted back, and so we watched something on Netflix that was probably of even lower quality than my joints, but regardless of the merit of the movie, her offer to do something less physically daunting prevented me from isolating myself and kept me distracted from the pain. If your friend needs to cancel plans because of her illness, respect that, and try to work with her to come up with something different to do. I know it must be confusing to see someone bouncing around town one morning and too sick to move much that afternoon, but confusion about it does not change the reality of it. Chronic illness can go from being a candle in the background to a house fire in a matter of minutes.

5. Check in during the okay times. 

     It might be tempting only to check in with a sick person when they seem to be having a particularly tough time with their health, but checking in regularly is important in order to establish a real relationship. If you only check in during the bad times, and your friend has to respond with "I feel terrible," every time, all they are really texting you about is how terrible they feel, and never how unexpectedly good they might feel one day, and that can be a real downer. Plus, even when everything looks to be okay from the outside, they could be dealing with something really difficult healthwise and might just be keeping it under wraps. Checking in at random times might seem intrusive, but really it is very helpful. Even just saying, "Hey, how have things been with your health lately?" or "Hi friend, how have you been feeling recently?" can be a great way to check up on someone that involves very little stress and a whole lot of love.

6. Maintain expectations of your friend. 

      Does it hurt your feelings when your friend sugarcoats how she is feeling, since you expect honesty from her? Tell her. Is it frustrating if your friend is always canceling but never attempting to reschedule? Tell her. Do you feel like you're the only one putting effort into the friendship? Tell her. Do you feel like you are always checking up on her but she is never checking up on you? Tell her. So many problems are solved just through open conversations. You should maintain expectations from a friend who is dealing with a serious illness just like you would for your healthy friends, while understanding that at times a sick friend may not be able to do the same exact things a healthy friend can.

7. You are not a doctor. You are not a therapist. You are a friend. 

      Being honest with a healthy friend about how you are feeling and having that honesty met with, "Have you tried going [insert food group here]-free?" (I will probably publish a whole separate post on unsolicited medical advice soon, but consider this the condensed version) is both disappointing and distancing. Even though you may have a million suggestions or ideas about what could help your friend, I guarantee you that your friend has enough doctors already and is not yearning for you to become another one. If your friend wants medical advice, she will ask. Similarly, your friend is not looking for you to analyze all of her feelings or try to make her think differently. You are a friend, so try your best to stick with empathy. Chronic illness patients have enough people trying to figure them out and telling them what to do, so it is more helpful if you can focus on being on "their side" whenever possible.

8. Be there.

      This is by far the most important tip I have to offer. Just be present, whether things are good or bad, whether you feel equipped to help or daunted by the prospect. If you have no idea what to do, just show up. They say showing up is half of the battle, but in reality it is more like 90% of the battle.

    Shout out to all of you who made it to the end of this, and thank you for your friendship! A special thanks to Spencer, Taylor, Annabelle, and Allison, who have all been particularly wonderful in my everyday fight for good health and who immediately came to mind when I made this short Twitter thread. I love you all so much! I hope this post is helpful and that we will all be kinder and gentler to our friends today than we were yesterday.