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.
"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.

Sunday, August 27, 2017

Blog Elul: Accept

Accept. Acceptance is really freaking difficult. The truth of the world is really difficult to accept.Childhood was for fantasies, but we are now grown ups and we now have to accept that there are bad things in the world as well as good ones. But we cannot simply accept hatred. hatred has no home in our communities. We cannot accept it.

But there are things that we must accept, with radical acceptance no less--the concept of accepting things as they happen, not passing any judgment upon them. We must accept that we are only human, and as much as we would like to be superheroes, human emotions exist and physical and emotional limitations exist. Let our power be found in that acceptance. Because when we accept our emotions and the things that come to us, we have to power to find empathy and compassion, and more than acceptance, our world needs empathy and compassion more than anything.

Saturday, August 26, 2017

Blog Elul:Choose

Our lives revolve around choices. We choose what to do every day. We choose how to live our lives, and most importantly, we choose what to believe in. We can choose to have faith in humanity and in ourselves, or we can choose to give up our choice and go by what the media or other people are telling us. But at the same time, we can choose to hold fast to our beliefs and not allow others to alter them. We can choose to believe that we have the power to change the world. Because, truly, we do. Every action that we choose to make. Every single choice. That choice impacts someone or something else.

And we can choose how to think. We can choose to think with empathy and compassion, to think that maybe that person who cut in front of us at the grocery store is trying to get home to a sick child or maybe that person who just snapped at us is having a really hard day. We can choose to be this way.

So this is my call to you. Choose action. Choose to believe in your power, and we can all be superheroes. Choose to believe in hope. Make your choices and make them known.

Friday, August 25, 2017

Blog Elul: Prepare

I was watching an episode of Grey's Anatomy from Season 1 the other day, and I noticed that the title sequence portrayed getting ready for surgery like getting ready to go out. This got me thinking about preparation. This whole week for me has been about preparation. The beat before. The anticipatory anxiety that every student feels before a school year, but Elul is about preparing us for something more, the High Holidays. Of course, I've started planning out services and brainstorming for my D'var Torah is at the top of my to-do list, but there's some emotional preparation I've yet to do.

How do we prepare our souls for the High Holidays? How do we prepare to start over? How do we prepare to forgive? Is it like preparing for school? Can I go out and buy something that can help me. Or is it all internal? My preparations for this High Holiday season involve a lot of journaling, long walks outside, and making sure to take time out of my day to talk with friends. How do you prepare?

Thursday, August 24, 2017

Blog Elul: Search

I'm  searching for answers. Both physically and metaphysically. I'm on a search to find what made my health so bad for a few weeks. By God's grace, they seem to have found a cause (stupid gallbladder), but the search involved numerous doctors and arguments and tests of all kinds. All I'm saying is that the search may be rewarding, but it's not always pleasant, especially for those of us who live with health issues. So I want to offer a prayer for those who are searching, whether it be emotionally, spiritually or physically:

May you search
May you find your way
May you live and love for yet another day
May you remember that on days when the search is hard
It's okay to just stay still, the search will go on tomorrow

May we search for love and peace
And find them in our hearts
May we be, hand in hand
Searching for justice
Throughout the land

Wednesday, August 23, 2017

Blog Elul: Act

I don't know how to act. I don't know how to act in the face of bigotry. I don't know how to act when there are bomb threats at my school. I've been feeling a little bit paralyzed lately. But all we can do is try our best. All we can do is continue fighting. I think I need to think about how I act more.

So that's my goal for the month. To act with intention. To act with love. To act in a way that I truly want to. And to choose not to act when I need to do that. Choosing not to do is something I'm working on. And it's a privilege to not have to act all of the time. I need to keep that in mind as well.

Please let me know your intentions and thoughts for the month of Elul!

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.