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.

Tuesday, November 28, 2017

Those in Need of Healing: A Poem

Those in Need of Healing
Most Friday nights I say,
If you are thinking of anyone in need of healing, mind, body, spirit or soul
Feel free to say their name out loud or in your heart as my eyes meet yours
But what does that mean. Who are those in need of healing?
I’ll get back to that.
There’s something eery about the quiet of doctors office waiting rooms
In hospitals there’s beeping and yelling
But here, on the ninth floor of this office building, it’s quiet
Like the anticipation of the end of silent prayer during services
The people around me, those souls
Are the ones I think of when we pray the Mi Shebeirach, the prayer for healing
We belong to this club
Those in Need of Healing
This club of shamed symptoms, spoonies, and unspoken solidarity
We may not know eachother’s names
But we are connected
by a web of hospital beds, IVs and “we don’t know what’s wrong with yous”
By medication side effects, muscle aches, and “you look better than you seem on paper”
There are rules for this club, just like there are for Judaism
Number One: Nobody talks in person.
At least not here.
Those in Need of Healing
We sit in silence, in prayer for ourselves and for eachother
For a diagnosis or no more new diagnoses
For no more emergency room visits and no more pain
We pray. And pray. And pray.
In waiting rooms and MRI machines
Until going to the doctor or hospital becomes like going to minyan
Hell, so many of us do it the same number of times per week or year
We are those in need of healing.
And you may not know who we are unless we tell you
We aren’t broken.
We aren’t bruised, well we may be physically, but not metaphorically.
We are warriors.
Like the Maccabees we’ll talk about in a few weeks.
We are strong.
But we shouldn’t always have to be.
And that’s where you come in.
Be kind. Choose to be kind.
To give a hug if it’s wanted.
To show that you care about the people in your life.

Be kind because you never know who is in need of healing.

Wednesday, September 20, 2017

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.

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