Thursday, February 27, 2014

What You Said vs. What I Heard: Grieving

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Some months ago, I ran across a post about what well-meaning people say to parents of kids with disabilities, and how a lot of those comments are unintentially hurtful.  This is over on the blog No Points for Style, on a post titled Dear People Who Do Not Have a Child With Disabilities...  Having gone through grief (still in it), I know how incredibly hurtful certain phrases are - phrases that completely and utterly come from places of concern and love, but come into my ears and into my wounded brain with a very different message.  I saw this post, which does a marvelous job of pointing out the difference between what you said and what I heard, which can be nigh impossible to understand if you've not been there.  I know - because I would have said a lot of these same things before I experienced grief, not understanding the anguish they cause.  Knowing how strong the misunderstanding was in myself (a person whom I consider to be thoughtful and caring, if somewhat tactless still), I want to write a similar post here.

For those of you reading who might not know me well, my boyfriend, DeForest, passed away from a ruptured appendix in July of 2012.  Even though he had been sick for most of his life (chronically ill with several auto-immune diseases [including Lupus and Crohn's]) and had outlived his projected life expectancy by a decade, it was still a real shock.  The night before he died, the nurses and doctors were saying he was fine and not to worry.  They had already placed the order to have a nurse come to our house and change his bandages every day once he came home in a few days.  No one knows why he died that night.  Anyway, that's why I'm grieving.

This post might not map to everyone who is grieving, but these are phrases that resonate with me.  I will also be sharing some of the things that do help, too.

*****

What you say:  Don't cry!

What I hear:  I don't want to see your pain.  Hide it.  Crying is shameful.  You're awful for making me see your pain and tears.  You're causing me pain with your pain.

Hey, you - crying helps.  All of the experienced people at this - the therapists, the other widows, etc - talk about how bottling up emotions is bad.  And I am especially bad at bottling up my emotions, which actually has helped me a ton throughout this horrible experience of grief, because I'm able to let it out.  Bottling it up hurts, and the pressure to cry just builds and builds.  Please don't tell me not to cry.

Furthermore, I am incredibly sensitive to causing others anguish with my grief.  Grief causes a lot of bad emotions to have power over you, and the guilt and shame spiral is one of them.  Grief means having to show pain and ask for help all the time, and when others make me feel like I am causing them pain, it just adds to all the pain I'm already feeling.  The last thing I want to do is cause others pain.  So this just makes me want to curl up and cry even more.

*****

What you say:  It's hard to see you in so much pain.  I want to help.

What I hear:  You're causing me pain with your pain.  I want this problem fixed so I don't have to feel your pain anymore.

Frankly, I'm supposed to be in pain now, and I'm doing what I should be doing, because this situation is awful and that's just how it is. The only way through this is to feel it and get through it, and that means lots of pain right now.  You can't fix it, or rush it.  And see the above paragraph about how this idea adds to my pain, and makes me feel like I need to hide away in a corner and like my wounds in private like a kicked dog.

*****

What you say:  He wouldn't want you to be upset.  He would want you to be happy.

What I hear:  You're wrong for feeling what you feel.

Long term, I completely agree with you. Short term (the first year or two of the grieving process, and then periodically thereafter for forever), though, I know he would absolutely understand what I'm going through.  He would support me if he were here and I was feeling this pain for someone else and tell me that it's natural and what I should be feeling. To me, this statement just feels like another way of saying "you're wrong for feeling what you're feeling," though I recognize this isn't what people mean when they say it.  I'm having a really hard time being sad for so long, and this just adds to the internal pressure I keep putting on myself to be happier, which doesn't help at all - my support network keeps telling me that I'm not crazy and that I have to let myself be sad, and DeForest would have said the exact same thing.  He understood pain and loss far more than I do (I've been learning fast over the past 1.5 years), and he understood that you have to give yourself time to heal and that beating yourself up for being upset and telling yourself not to be doesn't make the healing process go any faster. So please don't tell me that's how he would want me to feel.

*****

What you say:  He's in a better place.  God will get you through this.

What I hear:  ...  *crickets*

I'm not even sure what to say to this.  First, this assumes a lot of knowledge about something that no one actually can know anything about.  Second, you're assuming a lot about my belief system, and pushing your belief system on me.  Maybe this works for someone you know holds similar religious views, but it sure doesn't work for me, and I just generally find it offensive.  Please reserve these statements for people you know are religious.  (Hint: I'm agnostic.)  Third, even if an afterlife exists that is better than this one here, this sounds like another rendition of the above "don't be sad" and "you're wrong for feeling bad about this."  After all, he's someplace better!  You should be feeling joy for him!  Or something.  Just... ugh.

*****

What you say:  Have you found a counselor or a support group?  Have you considered medication?  I'm really concerned about you.  I feel like grieving is holding you back from living your life, and it doesn't have to be that way.

What I hear:  The way you are doing this is wrong.  Even though you have thought through this, and made your decisions for your own reasons, your reasons are wrong and you are clearly a giant mess - more of a mess than you should be.  You're lying to me when you say you are improving.  The small improvements you see are unacceptable, and you're a big liar, or, at best, deluding yourself.  I don't want to see your pain.  I want to fix your pain and make it disappear so I don't have to deal with it.

My reaction to this section (and what I would prefer you to do instead) really needs to broken up into two sections or stages.  This is much more complicated than the phrases before this, as it was far more frequent and involved for me.  Please bear with me through all of this, as this was (and still is) a large source of pain and anger for me, in a situation that is already awful.

First stage of this problem: when a person asks this the first time.  This is a question I got from every.  single.  person.  as I was going through this.  (Some people kept on asking, over and over again - I'll get to that in a minute.)  And every time that someone asked, I felt panic like I was doing things incorrectly, and that I needed to defend my choices.  I was forced to mentally review why I was doing things the way I was, and justify it again to myself.  This caused way more doubt and pain, on top of a wound filled with doubt and pain.  I had a problem with people even bringing it up once, because every person felt the need to ask me these questions. The first few times I heard it, it wasn't a big deal, but by the 5th time, and then the 30th time, and then some more... It's important for you to understand this, if you're dealing with someone who is grieving: you need to assume everyone else has already asked this. It really, really annoyed the crap out of me, because people wouldn't just accept a "no," either - they would start to try to convince me that those things were really worthwhile, and I'd have to have this giant conversation *again* with every single person, convincing them of why I didn't want those things.  It was exhausting and made me panic a lot.

Instead of asking about specific things that you think I need, perhaps ask this instead, and really listen to the answer:  Are you getting the help you need?  (For me, the answer is yes, I am.)  What kind of support do you think would help you?  (Mostly, just listen.  More tips are near the bottom of this post.)  And, if you really mean it and will follow through:  How can I help?  The answer is most likely going to be something along these lines:  just listen to me when I'm sad.  Let me talk and reassure me that everything will be okay, and that I'm okay.  Let me cry.  Please feed my cats and do my dishes and clean my bathroom.

Second stage of this problem: when a person asks this more than once, it's even worse.  This is important, as I'm still getting this question repeated to me now.  Now, it just makes me very, very angry, because I feel that those asking haven't been listening to a thing I've said over the past 1.5 years.

Being concerned whenever I reach out for help, especially if you are in infrequent contact with me, does not help me in the slightest.  I do understand that the concern comes from a place of caring, but I don't need concern, I need support and reassurance.  Your concern makes me feel like I'm causing you anguish.  It makes me feel like you are calling me a liar when I say, no, really, I'm getting better, I just need reassurance today.

Try Soothing Your Own Concern: Look for the good signs.  If your friend is seeing a counselor, ask what the counselor says about how they are doing, and trust the answer.  Find contact information for the people who are around your grieving friend all the time (the people actively helping them day by day, week by week), and ask them what they think, and trust their answers.  Look to the lengthening time between posts asking for help, and see hope there.  This situation is far more burdensome for the person grieving than it is for you - please do some of your own detective work, instead of further burdening the grieving person with your feelings about their pain.

To help you understand why I made the decisions I made about the help I found and accepted, here are my views on counselors/support groups/medication (as it pertains to me and my grieving).  I'm also putting this up here, once and for all, because I am still getting these questions from people.  My answers have not changed, and now this just enrages me, because it means that you're not listening to or respecting my choices.  If you insist on continuing to ask me this question or say you're concerned about me when I reach out for help, I will cut you off from anything to do with me grieving for my own mental health, as this causes me a fair amount of anger and anguish.  I don't want to have to do this, so I'm trying one last time to explain my choices clearly.

Counseling:

For me, counseling wasn't at all useful for the first year.  I was in so much anguish that it was just a matter of trying to survive, minute-by-minute, then hour-by-hour, then minute-by-minute again.  I, luckily, had a couple widows to talk to in real life, whom I could call at any time and get some reassurance from.  The first year is just a wash of pain and getting through the pain, and distracting yourself from the pain, and feeling the pain, and more pain pain pain.  For someone who is isolated and doesn't have an extended support network of friends to talk to who have felt loss, counseling might be a great thing at first, just to hear someone tell you that you're not crazy.  Because experiencing grief is about total loss of control, and you will never realize just how many layers of emotional control you have until you lose ALL of them.  I felt like I was going crazy and out of my mind.  But I had a couple people I knew to talk to, and all I needed that first year was to be told that what I'm feeling is normal, and that I'm not crazy, and to just keep going.  A counselor - someone who didn't know me at all, and whom I had to talk to on a schedule, when my emotions were not at all about being on a schedule - did not help me at all.  I tried to talk to a counselor twice.  It was useless.

I did seek counseling help starting last August, 13 months after DeForest died.  And you know what my counselor said, the first time we met?  That counseling is often useless for the first year after grief, because it's just all about putting one foot in front of the other and continuing to exist.  Counseling, in his opinion (and I agree, at least in my case), is much more useful starting the second year, when the psychological issues start to come out, and I have enough emotional energy and control to try and deal with those issues.  I finally sought counseling when it was clear that I was beating up on myself over and over again - when the negative voices in my head had gotten so loud that it was hard to hear other voices.  But another key part of my decision to seek counseling then?  The most important part?  I was ready for it.  Until then, I wasn't ready to tackle the emotional issues, and the idea of seeing a counselor was just too much pressure for my complete lack of emotional energy.  I just needed to survive it.  When I decided I was ready to do more than survive, I found my counselor.  And he is amazing and incredibly helpful now.  But not then, he wouldn't have been, because I wasn't ready.

The phrase that pushed me into seeking counseling wasn't someone asking me if I needed a counselor, by the way.  It was a friend saying "wow, you're being really, really mean to yourself," and me recognizing that this was a problem that I was ready to tackle with help.

Support Groups:

All the support groups I could find were at places like retirement homes.  I really did not want to go to one of those - I felt like I would've been wildly out of place.  I looked.  Please just believe me when I say that I am not interested, and let it be.

Medication:

Grieving is a natural part of life.  It is something that we are equipped to handle, though none of us handle it with perfect grace.  I completely understand that there is nothing shameful about taking medication.  I thought very hard about this, and this was my criteria for when I would consider going on depression medication:
  • When there was no signs of improvement in over a month, with no clear reasons for the lack of improvement (anniversaries, etc).
  • If I ever became suicidal.
  • If my livelihood depended on it, and I was in danger of not being able to pay my bills or afford food, and I needed to be able to function at a much higher level, sooner than nature intended me to.
None of these things have come to pass - not even close.  Furthermore, my therapist sees none of the warning signs he looks for when thinking about recommending medication, such as "not feeling the full range of emotions."  He actually told me that my anger at still getting this question shows that I don't need the medication.

There are also real side effects to depression medication - ones that can very much add to depression (such as interfering with libido and body image issues).  I'm not trying to convince anyone here that they shouldn't seek medication if that's what they feel they want, but there are other ways of doing this that are also legitimate.  It is my choice that I want to do this the slow way, the feeling-all-my-feelings way, the way we have been doing this for our entire history until the last few decades.  I would like that choice to be respected.

To anyone who is reading this and grieving right now and wants medication, I want to add this: you are in NO WAY weak for wanting medication or wanting help to get the pain to stop.  This is an awful process, and however you decide to get yourself through it - that is the right way to do this, for you.  That wasn't the way that I wanted to do it, is all.  You make whatever choices you feel you need.  And hugs.  And email me, if you need someone to talk to who has been there.


*****

Things That DO Help
  • Just acknowledge my pain and let it be there.  A hug and a "I know" or "I'm so sorry" works well.  I know my pain is scary.  That's okay.  Just don't leave alone with my pain.
  • Grief is repetitive.  Just listen.  I have said "I miss him" over and over again.  All I need is a nod and a "I know."  I need to say it.  I need to know others know.
  • If I need to go off and be away from lots of people (I had anxiety attacks about being around lots of people for many months), it can sometimes help to have just one or two people there to be with me as I freak out and cry, so ask if I would like company. It's really hard for me to ask for things (I've been asking for help all the time, and it's exhausting), so offers are good, especially when I know that either a yes or a no will be accepted equally.
  • If I'm freaking out and crying, assure me that things will be okay and that I'll get through this. In my better moments I know all of this, but when it gets bad it feels hopeless and so painful and feels like it will never go away and it's really scary. Assurances are good.
  • Don't try to fix my pain.  There's nothing here to fix.  I'm doing exactly as well as I should be doing.
  • Just act natural and let me talk about things.
  • The last thing I want to do is ruin someone else's day.  Reassure me that you do really want to see me, and that it's okay to feel the way I feel, and that I'm not a burden.  
  • Ask me if I need help with cooking or cleaning or anything else, and follow through if I say yes.
  • Send me a note or a message, saying you're thinking of me or about something you've been doing lately.  Grieving can be very hectic and scatter-brained.  Even if I don't respond, I notice, and it warms my heart that you want to stay connected.
  • As No Points for Style ends, so shall I: "Keep listening. Just show up and listen. There’s nothing any person in pain needs more."
Helpful Resources:
  • 10 Ways to Show Love to Someone With Depression:  This article is amazing.  Seeing this article posted recently reminded me to write this post.  Do all the things in this.
  • The Young Widows Bulletin Board:  This is a great resource.  It has forums for the different stages of grieving (the first few months vs. years later), and lots of posts from people who have made it through.  It helps to read the experiences of others and their advice, because they are going through (and made it through) much the same thing.  It can be hard to find young widows in our culture.  It's also great because you can talk to people immediately and at any time of the day, right when you need help.
  • If you know other people who have been widowed or gone through close grief, contact them and ask if they would be willing to talk to your friend who is grieving.  I am lucky to have the tight-knit community of the SCA, because I was put in contact with several other widows.  One in particular ended up speaking to me the way I needed, and she was (and still is) simple invaluable.  There were times when I called her three times a day, and she was able to reassure me that I wasn't crazy.  Having another widow to talk to was so much more useful than a counselor would've been in the first year, for me.  She was available when I needed her, not once a week on a schedule, when I may or may not have been in crisis mode or felt like talking.  I cannot state how vital this can be.  I still call her every month or two when I'm having a particularly bad day, and she helps me through it, every time.  Amazing.
That's what I have, for now.  I know that what I hear and what you said don't match up, and that all of the questions/comments come from places of love.  All I'm asking from you is to believe that these phrases cause me pain and/or anger, and to respect my wishes not to use them.  Just listen when I'm having a rough day, and continue being my awesome friends/family and including me in your lives like normal.  Thank you!

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