Part 2: Living with Chronic Illness: What Not to Say

Chronic illness is an ever changing beast that we have to learn to work with. And we aren't handed a toolbox with which to fight it. My life with chronic illness has evolved a lot over the last year since I posted the first half of this blog post. I've grown a lot as a person and actually learned to make friends because of my chronic illness. Once again, these are all written from personal experience, and you may feel free to disagree with anything that you so choose. Please leave your thoughts in the comments, and I hope that you all have a wonderful day filled with many spoons if you need them (If you're confused, click the link)!


Don't Say: "You look great."
I understand that this comes from a place of kindness, and that you, when you are saying this, see it as a compliment, but it can come off as invalidating of someone's illness. Often, this one will sound like "You don't look sick." Especially when it comes to invisible illnesses, one may often look completely healthy while suffering greatly on the inside. Yes, I put on makeup and did my hair today, but that doesn't mean that I am not in pain. No I may not look sick. But, yes, I feel sick, and your words are not helping.
Don't Say: "Are you okay?"
The concept of "okayness" is a weird one because it is relative and completely undefined for the most part. On a day where most people might be miserable, a chronic illness warrior may say that they are "okay". One can still be "okay" while being sick. Additionally, this question puts pressure on the person to say yes because it is often asked without the expectation of the answer, just like the question, "how are you?"

Do Say: How are you feeling?
This one goes for a bunch of the "don't says" because it is generally just better to ask a question about  how someone is feeling as opposed to assuming literally anything. It allows the person to give an honest answer about how they are actually doing. It doesn't assume health or sickness. The one catch with "how are you feeling," is this: you have to actually be expecting and wanting a real answer.

Don't Say: "You're trying the best you can? So are the rest of us."
This one is just mean, in my opinion. Even if it is trying to make the person suffering feel less alone, it is completely invalidating of the fact that many people who struggle with chronic illness have a much harder time, and additionally, it is just never helpful to compare two peoples' pain because pain resists the simplicity of language and we can never truly live inside another person's brain, so we can never truly know someone else's pain.
Do Say: You're not alone. I'll be here for you no matter what. 
One of the hardest parts of chronic illness is feeling alone, so this reminds the person who is suffering that someone is there for them. Additionally, many people with chronic illness, including myself, often feel like a burden upon their friends and family, so reminding them that they have someone who loves them unconditionally can help a lot.

Don't Say: "Oh do they know what that is?"
This one is a tad bit insensitive, and in my opinion should be common sense, but people have said it to me, so I felt compelled to include it. Yes, I am also wondering why I am feeling the way that I am feeling, however, you asking is not doing anything to help.
Do Say: "How'd your appointment/test go?"
This doesn't assume anything, and it allows the person to talk about what is probably on their mind anyways. Often, people with chronic illness feel that they are boring or annoying their friends by talking about their illness with some regularity, so asking them about their appointment gives them an opportunity to feel comfortable talking about it.

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.

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.

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?

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

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!

"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.  And in many ways, I understand where you are coming from. Our society doesn't train us to talk about illness as a long term thing that has no foreseeable end. We aren't taught how to care for people with chronic illness. 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. We aren't always looking for understanding. Sometimes we are just looking for comfort or for someone to validate our feelings and make us feel heard.

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.

6. Be kind to yourself. Your body is already fighting. You do not need to fight it.
Often, when we are caught up in pain or illness, we end up forgetting to do the things that we actually enjoy. We only give ourselves what is absolutely necessary to survive, and that is not enough to live on. Reminding us to take care of ourselves in a way that may not be explicitly physical can be really helpful. The other positive thing about this one is that when our bodies are not doing what they are supposed to, we are often angry with them which is valid, but it's not always productive.

7. You are doing well.
I know that this one might be a little controversial, but it really helped me recently. When in the middle of a chronic illness flare, it can feel like we are doing everything right, but our bodies are still suffering in some way. Validation of our efforts can be really helpful.

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.

Note: This blog post was originally published on 6/2/17, but it has been edited on 5/9/18