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, June 2, 2017

"What Can I Do To Support You?": What TO SAY To Someone Struggling With a Chronic Illness

In a recent flare up of my chronic illness, I found myself struggling with answering the question, "what should I say?" or "what can I do to support you?" These questions just made me angry because it's just like if you tell someone to apologize to you, the apology then means nothing. This is no fault of the person asking the question. Our society doesn't train us to talk about illness as a long term thing that has no foreseeable end. So I thought I'd write a list of things you should say if someone comes to you struggling with a chronic illness. This also serves as a sort of manifesto of things I would say to my fellow spoonies/chronic illness warriors as well.

DISCLAIMER: This is just my opinion; I'm sure that you may disagree with some of the things I say here; if you do, please feel free to leave your thoughts in the comments.

1. I'm not going to sit here and pretend to understand what you are feeling or going through.
Why: Unless you actually understand, this is a necessary first thing to say because most likely, you don't understand, and that's okay. My experience, and I'm sure that other chronic illness warriors would agree with me, is that each person's journey is very unique and while you may understand aspects of what I'm going through, you probably don't fully understand.

2. I will not tell you that everything's going to be okay because I do not know that; I am not your doctor.
Why: Our instinct while comforting is often to say, "It'll be okay," but the struggle with this when speaking to someone who is battling chronic illness is that that's not necessarily true, so it can feel invalidating of our experiences if you say it. Instead, acknowledge it, as scary as that might be for you as well.

3. I know that you feel alone, but just know, that while you may feel alone, there are people out there, including me, who love and care about you and benefit from having you in their lives.
Why: Chronic illness is isolating; there's no way around it, so reassurance is especially helpful. One caveat with this one is that you have to say it even if the person is not believing you because often, when we are stuck in pain or alone for so many hours of the day, one person saying this to us is not actually going to fully remedy the loneliness, although it can do something to help.

4. I know that on some days you want to give up, and that's okay. Chronic illness is hard and taxing, but on those days, you can call me, and I will sit with you in the pain and not tell you to have a positive attitude.
Why: I am so sick and tired of people telling me to "think positive." I get it, that's what we are trained to say. Choose happiness and all of those other pinteresty kinds of quotes, but there are going to be some days when we want you to just be supportive instead of trying to impart advice upon us. Something John Green said he was told sticks out to me, "don't just do something, stand there." And this is super important. Being there and sitting through the bad days is the absolute best thing that you can do.

5. I see that you're scared, and while I can't take away the fear, I can tell you that you will never be alone in facing the darkness,
Why: Uncertainty, no matter how hard you try to embrace it, is scary and while it is a very necessary part of life, the worst part about it is facing it alone. We may not be able to shine a flashlight into the darkness of the future, but we can certainly hold hands while we step into that darkness.

As always, your input is always appreciated. I try to use these strategies in my own work and I hope that they will be helpful to you as well.

Wednesday, May 31, 2017

Choosing to Connect: Thoughts on Shavuot and the Book of Ruth

Note: Much of this information and teaching came from the wonderful rabbis I had the pleasure of learning from last night--Rabbis Andrea London, Michael Balinsky, and Rachel Weiss, so thank you to them for their wisdom insight and source sheets that I drew on to write this blog post.

From what I can tell, the holiday of Shavuot is all about connection, connection to God and connection to the Jewish people, to one another. There's the basics of the holiday: we are connected to the commandments that were said to have been handed down from Sinai on this day, but I think there's a deeper aspect as well.

On Shavuot, we traditionally read the book of Ruth. The book of Ruth has something to teach us about connection to others and about "chosen family." If you're unfamiliar with the story, you can read it here, but for this point, the important part is that Ruth chooses Naomi, her mother and law. When both of Naomi's sons have died, Naomi tells her daughters in law, Ruth and Orpah, to turn back and go back to her people, the Moabites, but Ruth refuses. Ruth "clings to" Naomi and says, "Do not urge me to leave you, to turn back and not follow you. For wherever you go, I will go; wherever you lodge, I will lodge; your people shall be my people, your God, my God." This seems like a love confession, not necessarily a romantic one, as some scholars would say. Ruth and Naomi are mother in law and daughter in law. They have no blood connection between them and yet, Ruth chooses to stay with Naomi, to adopt herself into Naomi's family.

So many of ourselves have found ourselves feeling alone either because of a part of our identity that has not been shared or because or because we are a minority or because we are struggling with something that no-one can see. Ruth and Naomi were isolated too. It was quite unusual in Ancient Israel for a family to just be two women, and yet, as Ruth did, we must take the risk of connecting with others and choosing them for our family. We must choose carefully, but choose lovingly. And at the end of the day, the connections between members of a chosen family can be just as deep or deeper than the ones between a family by blood.

Also, we are the connection between God and the earth, just as the mountain is the physical connection between the earth and the sky. Shavuot is all about receiving the Torah from Mount Sinai, but what does that really mean in the modern day world where we receive things all the time and we live in a world where we can receive information in seconds from devices we keep in our pockets? It means we still have to obligation to study Torah because Torah is what connects the heavens and the earth. When we stand tall, with our hands open, we are ready to be the messengers of Torah; we are ready to receive the Torah we need and if we are open to God's teachings, our help will also come from God, maker of heaven and earth, often in the form of Torah and love from other Jews.

Saturday, May 6, 2017

V'ahavta Lvrarecha Kamocha: Loving Your Neighbor As Yourself Even When It's Hard

I pride myself on loving everyone in my life unconditionally. But I wasn't always this way. So today, I'd like to talk a little bit about loving one another even when it's hard. This past week, in the portions Acharei-Mot-Kedoshim, we read the words "v'ahavta lvrarecha kamocha"--I apologize for the terrible transliteration. You shall love your neighbor as yourself. Okay, this seems easy, but I don't think it's supposed to be easy. I think that loving your neighbor as yourself is supposed to be hard:

The first challenge is with loving people who seem to have irreconcilable differences with you. This is difficult. How can I love and respect someone if they are hurting me or if they have beliefs that pain me to think about? And once again, this is not easy, but I think we need to recognize the humanity in each person. You can love a person for who they are even if you don't want to spend a lot of time with them. You can respect someone's beliefs and argue with them instead of cutting them out of your life. You can embrace difference and see it as an asset as opposed to as a problem. This leads me into my second point: Loving people who it's hard to look at.

I know we've all done it. Crossed the street so we wouldn't have to walk past a homeless person, awkwardly avoided the person in the wheelchair at the movies, judged someone for their clothes. Believe me, I have a little sister in a wheelchair. I know what kind of looks we get when we walk down the aisle at the grocery store. We like to throw around buzzwords: inclusivity, diversity, celebrating differences. But how do we actually celebrate differences? In order to do that, we need to stop avoiding difference and start just loving other human beings while confronting difference head on. You can ask me what my sister's name is or just simply wave to her, acknowledging that she is human and your neighbor just like the cashier who you tell to have a nice day. You can spend a little more time listening than you do talking, and maybe, you can realize that all anyone wants is to live a meaningful life and be respected by other human beings.

The last point I want to make is about loving when it's hard in terms of people who are already a part of your life. Sometimes, I'm a hard person to love. I isolate myself, scared that the symptoms of my various preexisting conditions will make me an outcast. I complain of pain, sometimes leaving very little space for other people. It's easy to love someone in the good times. That's not a difficult task, but it is so much more meaningful to love someone in the bad. And at this point, I'd like to thank all of the people who have sat down with me, asked me how I was and wanted a real answer, given me rides places, listened to me talk for hours or just hugged me and told me that I was okay and that I was doing the best I could. These people are the people who love unconditionally. I strive to be one of these people as well: I never turn my phone off, so if someone calls me and tells me that they need me, I will be there in a second. It's just who I am.

We need to strive for love, no matter how much hate and disdain and discomfort there is out there. We need to take this commandment to heart. Love your neighbor as yourself. I'd like to add: even when it's hard.

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.