Saturday, May 18, 2019

Living With Chronic Illness: What It's Helpful Not To Say

I live with chronic illness. It's depressing and hard to talk about.  It's everything going wrong and at the same time nothing actually being wrong. It's spinning in a circle and then tumbling off balance. It's fighting a war inside of your head with no battle wounds to show for it.

A quick disclaimer before I actually start talking about this: I know that anyone who has said these things to me or anyone else in the past has meant well and that you say these things because you care. And I don't blame you at all. We aren't handed a toolbox that tells us how to deal with chronic illness (although that would be helpful), so I'm trying my best here to let you know, at least from my perspective, what it's helpful not to say and what you should maybe say instead. These are not hard, fast lines. I don't have all the answers. I wish I did.  I also recognize that I am not unique in struggling with this. This stuff is difficult to talk about, but it needs to be addressed.

Don't say:
"I'm sorry that you had a bad day/month/year."
This is what it makes sense to say. Yes, it was a bad day. But I don't know when things will be good, and at the same time, things could be good tomorrow and then bad the next day, or in a week. Unfortunately, this can make someone with chronic illness feel pressure to "get better" for other people. If I could choose to stop dealing with this and wake up tomorrow completely healthy, believe me, I would. But chronic illness isn't fixed by the passing of 12 hours or however many more are left in the day.
Say:
"I know that there are bad days and good days and I'll be there for you on all of them."
This is comforting because it allows me to recognize both the fact that you care about me, and also that you, at least on some level, understand that chronic illness--mental or physical--is more or less permanent. The challenge is finding people who will stick with you in both the ups and the downs.

Don't say: "There are so many people who have it worse than you."
Who does this help? Pain-is measuring contests (as my friend called them) are completely useless. And more importantly, if you know me (or your loved one) at all as a person, you know that I already know this. I know that there are many people who have it worse off than me. I know people in my life who struggle more than I do. Additionally, many people with chronic illness, including myself, already feel like their pain is insignificant and that they should just "get over it."
Say: I believe you and recognize that your pain is valid."
In our society, we don't properly acknowledge the value of validation. People with chronic illness, especially chronic illness that is not visible to the naked eye, often feel like they aren't heard because people have to believe their struggle from hearing their words alone.

Don't say:"Oh, have you tried meditation/yoga/exercising more/a gluten free diet (and the list goes on and on)."
I find this one is more prevalent when talking about mental illness. I'm not sure why: maybe it's easier for everyone to pretend to be a therapist than it is for everyone to be a doctor. I am lucky to have wonderful doctors who will tell me if there is anything else I can be doing to make myself better.

We live in a DIY world where there are thousands of articles on the internet about how you can make your life better if you just drink more water or get up earlier. It may surprise you, but I drink five bottles of water a day, exercise at least four times a week, and do my best to get eight hours of sleep every night (except for the fact that I struggle with insomnia). I write in a journal and go to therapy. I am honestly trying my best to take care of myself, and you telling me this tends to make me feel like there's something I could be doing to "help myself," and that it is my fault that I am still sick.

Say: "I know you're doing your best. It's not your fault."
I work hard to hide pain from other people. If I am talking to you about this, I trust you and you are probably pretty important to me. This acknowledges the effort that I and many others put into living our every day lives. The second part of this recognizes that the blame is not on the person who is suffering because nobody chooses to have a chronic illness.

Don't say: "God gives you exactly what you can handle."
I am a fairly religious person, however you want to define that word, and I most certainly believe in God, but if I thought that God could stop illness or other destruction happening in the world, I would not believe in God. And probably, if I am crying or struggling, feeling like I can't handle it, it is unhelpful for you to say that God thinks I can handle it. Also, how the heck do you know what God thinks?
Say: "If you're comfortable with it, I'd like to pray for/with you."
It's hard for me to come up with an alternative for this one because it drastically depends on both the person saying it and the person suffering as to what one should say.

Don't say:"If you need anything, let me know."
At least for me, I can honestly tell you that I won't let you know because I already feel like I'm a burden by talking to you when you have your own life to deal with. I won't reach out until I am sobbing in the fetal position on my floor or screaming at everyone in sight. And I'm trying to get better at this, but it's really hard to have to be the needy friend, especially for someone like me, who would rather be the one being leaned on than the one who is leaning.
Say: "Can I come over?" OR "I'm going to the drugstore/supermarket/out to dinner, can I bring you anything?" OR "I'm always here; I'll check in tomorrow."
Alright. Let's take these in order: First, at least for me, physical presence is very comforting to me, and you just being there, either in silence or talking can be really helpful. Additionally, while I am struggling, I  feel quite alone, so if it's possible for you to be around, that would be helpful. Second, there are days when I don't feel like getting out of bed, and I also often forget to eat, so you bringing me food can be invaluable. Third, this takes the pressure off of me to reach out, and I probably will reach out again at some point, but this releases the feeling like I have to bother you again if I need something. Sending a quick text the next day or in a few days is endlessly helpful.

Thank you for reading to the end of this endlessly long post. I appreciate you trying, and I hope that this helped at least a little bit if you are feeling confused while your friend is struggling. I would love to hear your thoughts on this piece; please feel free to share.



Friday, April 28, 2017

Coming Out As Chronically Ill: Yes, I am a Zebra

They say that when you hear hoofbeats, you should think horses, not zebras. But I am here to tell you, that some of us are zebras. I am a zebra. You need not be scared. You need not be cautious, but you must be understanding.

Recently, my chronic illness has been flaring up. I've had a lot of pain in my hands this time a symptom that I hadn't ever experienced, and for the first time ever, I've had to express my limitations to pretty much everyone in my life. And that has been scary, so I'm here to give you some advice on talking to someone who has just told you that they have a chronic illness, and that they are struggling in the moment.

When someone comes to you in pain:

Don't Say: Oh I understand, I hurt my knee/hip/hand playing soccer last week.
Do Say: I can't understand, but I want to try (and if you can understand, please please please share in hospital stories and morbid jokes with me).
It's okay that you don't understand.  I don't need you to understand, I just need you to be there. And frankly, you're probably not going to understand. I need you to acknowledge that right now, I'm not doing well, and I need you to let me be selfish, at least for a little bit.

Don't Say: How are you feeling? (If you don't want an honest answer)
Do Say: Can I help you with anything?
Obviously, if everything is hurting, I am not okay, and I hate having to lie, so that people don't have to deal with my problems. And I'm probably not going to be your definition of "okay" ever. I have a chronic illness that has become my "new normal." I'm used to the knee pain and all of the other things that come along with my rare disorder. But asking if you can help makes me feel a little less alone, one of the hardest parts of having such a rare disorder.

Don't Say: You're so strong.
Do Say: I admire your courage.
It's scary to tell people that you are sick. I was incredibly terrified when I had to tell my professors that I was struggling, and I'm a little bit scared to write this blog post. We live in a productivity driven culture that implies that you are "weak" if you aren't getting things done. And I don't feel strong when my chronic illness is flaring up, especially when I'm feeling quite alone and scared. Telling me that I'm strong is negating what is actually wrong. Affirming my courage makes me feel supported and hopeful for the future. Because I do feel brave. I feel brave for learning how to navigate Massachusetts General Hospital and for getting myself to the emergency room when I need to go and for calling my doctors. Thank you in advance for affirming that.

Thank you to all of you who have supported me so far, and thank you to those who will support me and others in the future. The only way one can survive is with support. Thank you for affirming my stripes. 

Friday, April 14, 2017

Ancient Prostitutes: Single Women or Slave Women?

In both of the languages that I study--Hebrew and Latin--there are many words for prostitute, from zonah and kadesha in biblical hebrew to meretrix, scortum, and lupa in Latin. But what can these words actually tell us about who these women were and how their systems of prostitution worked--if there were systems at all.

More specifically, I want to talk about whether these prostitutes were slaves or single women. The answer to that question depends on a lot of things including which culture you want to look at: Roman or Ancient Israelite: Ancient Israelite/Biblical prostitutes, at least from the research that I have done so far( and I'm probably writing my final paper for the year on this topic) were the only women in Ancient Israelite society who were free from the control of a man. Before marriage, women belonged to the oldest man in her family, usually her father, but sometimes the brother would take control if the father had passed away. After marriage, the woman belonged to her husband, and if the husband died, she would be sent back to her father's house. The prostitutes in 1 Kings 3 came to Solomon because they didn't have a man to make the decision that they were looking for. I'm sure there are other examples.

But Rome, on the other hand was a little more complicated. Prostitution was an extensive industry: looked down upon, but at the end of the day, relatively common. There were brothels on every corner at least according to the archaeological record at Pompeii. There were essentially two categories of prostitutes in Rome. The first, called a number of things, including a mulier, a woman, or a scortum, or occasionally meretrices in the plural, were prostitutes, owned by a man, a pimp, a leno,  who worked out of inns or taverns or in a brothel.  These women, often foreigners who were captured by pirates or in battle, were sold to the pimps as slaves. They rarely made enough money to buy their own freedom. The second category was the meretrix, a word that literally means, the one who earns. These prostitutes were generally Roman women who chose this profession. She walked the streets and acquired her own clients, and she in fact wasn't under the control of any man.

So what's the verdict? I think it's still out. The Zonah and the Meretrix were certainly single, independent women, who didn't need a man, but does that make up for the pimps, the lenones that enslaved many helpless foreigners? You tell me.

Wednesday, April 5, 2017

#BlogExodus:Perplex

Perplex. Confuse. Complicate.
I am perplexed. Why do we act in the way we act? Why do we choose what we choose?
Why did I wake up in pain?
But there are also good things that I am unable to explain.
What exactly makes a person or piece of writing inspiring?
Why can people be so kind?
 I am confused.
But I am content with being perplexed.

Tuesday, April 4, 2017

#BlogExodus: Expand

Take a deep breath.
Let your lungs expand and then deflate.
The magic of the human body.
Stretch your arms.
Take up space.
What will you expand into?
Who will you be?
The future has yet to come.

Monday, April 3, 2017

#BlogExodus: Read

The things we read influence us. They change our lives, shaping how we look at the world and how we look at other people. Everyone's story can be pulled, at least to some extent from the things that they read, whether that be the Bible or anything else. My story is intertwined with the Animorphs series, Harry Potter, and so many more pieces of writing. My story is intertwined with the Shakespeare plays and poems that we grandfather reads me at the breakfast table. My story is intertwined with Crime and Punishment, one of my favorite books that we read in my high school career. And my story is wrapped in and out of books by Abraham Joshua Heschel and liturgical supplements and every prayerbook that I can get my hands on. And by the Love Song of J. Alfred Prufrock, a poem that I truly think changed my life. There is so many pieces of writing that I have read that have shape my story. My hope for the future is that someday, I will have the chance to write something that will shape someone's story just like so many pieces of writing have shaped mine.

Sunday, April 2, 2017

#BlogExodus:Retell

Judaism does a lot of retelling. Retelling of our own family memories and of the stories of our people. This got me thinking about why do we retell these stories so often? What can we learn from retelling the stories of history? I think about this a lot when I think about why I study Classics as well. And I think we retell for a couple of reasons. First, we retell stories to bring people closer to their ancestors and to their descendants. Shared stories are often what make communities strong. Second, we retell stories with the hope that history will not repeat itself if we remember it. Whether this always happens is a different issue, but ideally, we can learn from our mistakes and we can learn to speak out if injustice arises.