I recently wrote a post about how much I’m grieving, how sad I am. Writing the post, itself, was a very important step for me. It was cathartic, and there was something about being able to say in a public forum, “I am hurting,” that was healing. I got some responses I found supportive and helpful.
I also got some responses that triggered feelings of anger, frustration, and loneliness. I wished I had never read or heard these comments, but since I had, I wavered about how to respond to them. Part of me wanted to ignore them. Another part of me wanted to respond by indicating that these responses were not helpful because I wanted to head off similar comments.
Part of me wanted to respond with a snarky post, such as a bingo card (which I still might do for other reasons or on other topics, because I love them so much — see examples here, here, and here. Oh, and what the heck, some nondisability bingos here). However, I am studying nonviolent communication (NVC), which has really changed my perspective on communication and how I try to communicate; I have learned it is often much more helpful to tell people what I want than what I don’t want. I was trying to think of how to respond in an NVC way and finding the mere idea baffling and exhausting.
Then I read this amazingly thoughtful post by Lisa Bonchek Adams about a list that appeared in the New York Times of what not to say to someone who has cancer. Lisa agrees with some of the listed items and not others, but her main point is that she never made a list of what to say or not to say for some very specific reasons. Her reasons make so much sense. (The comments from her readers are also full of terrific insights.)
One reason she gives is that people are already nervous about how to respond to someone who is seriously ill (and I would add the same is true for those going through any sort of crisis or who express strong “negative” feelings) and worry about saying the right thing. By telling people what not to say, you are contributing to that nervousness, which increases the chances of them saying nothing, which is often the worst thing.
Second, she says it really makes a difference who is saying it to you and how it is said. I absolutely agree. For example, I usually hate getting unsolicited advice from most people. However, sometimes suggestions are welcome if it’s someone I am very close to who is also chronically ill.
Third, she says the most important factor is that the person’s expression is honest. There is a lot of truth to this, although I don’t agree 100 percent. I don’t always want to hear someone’s honest thoughts, feelings, or opinions, either, depending on what they are, but better at least that they say something heartfelt and honest than that they present a platitude.
I strongly encourage you to read the post and the comments.
This topic is going to keep coming up here, not just because I will always be chronically ill, but because right now I am finally unearthing my feelings of grief that have been “frozen” for several years. I have a lot to grieve: my service dog’s death, one of my best friend’s death, the deaths of other friends, the “parting of ways” of my two very closest friends and several other friends, the multiple and devastating losses that have accompanied my new disabilities and illnesses associated with tick-borne disease, and more.
Some of these losses happened during times when I was literally struggling to survive. I didn’t have the luxury at that time of grieving. Then, there were losses that happened so close together that I was completely overwhelmed, unable to process any of them (such as the three-week period where I went through a PTSD-inducing natural disaster, my best friend stopped speaking to me, one of my other best friends died, and my therapist terminated with me against my wishes and with no referral).
I was numb. That was how my body/mind enabled me to survive — numbness. I didn’t have a choice, nor should I have to defend how I coped, but I found that when I was honest with people about being numb, their response was usually to tell me not to feel that way.
Lots of people told me, when I was dealing with some of the more public losses, such as Gadget’s death, that I should cry, I should journal, I should let my feelings out. This was beyond unhelpful. For one thing, I wasn’t able to do these things. Everyone grieves in their own way, and usually the best you can do is to just follow where your feelings lead you and try to honor them.
I actually tried to force myself to feel, to cry. It didn’t work. I couldn’t do it. I was still numb.
My therapist told me that there was a reason I was numb, and that it’s a normal way to grieve, and that I would be doing myself a kindness to accept that this was the coping mechanism I needed to survive. She also encouraged me not to spend time with people who told me I was grieving wrong.
The other problem with telling me I shouldn’t be numb, that I should cry, etc., is that they laid a burden of guilt on me. Instead of hearing compassion and understanding, I heard judgement: “You should cry. You should journal. You should let it out. Because you’re not grieving this way, you’re grieving wrong.”
“Should” statements are never helpful. Really. Even if you are offering a heartfelt suggestion and have been given permission to offer advice, don’t use “should.” Use, “I have found that it helps me to” or “have you considered?”
Now, I am having my feelings and expressing them. I am crying. I am feeling sad. I am also feeling angry, frustrated, hurt, lonely, and all sorts of other permutations of pain. This is because I am grieving. Grieving can encompass any emotion, and it can come at any time after (or even in anticipation of) a loss. There is no right or wrong time for grief; it happens in cycles, in stops and starts, over short periods and long.
The irony is that I am finally doing what all those people told me to do in the last several years, and I’m hearing negative reactions to this, too! I’m being told to buck up and look on the bright side and move on. I feel really angry about this.
All of this has led me to think: “What do I want to hear when I am expressing suffering or pain? When I am grieving, whether it is in a way that is perceived as acceptable or not? When I am numbed out or when I bawling? What have been the most helpful comments people have said on the phone or posted on my blog?”
The answer is that I want to know that my feelings are welcome. That the other person wants to listen. That they are okay with whatever I am going through. That I can just express myself without having to worry about their needs for the moment. That they care.
“Thank you for sharing this with me,” and “I’m so glad you told me,” are two examples of comments people have made that felt very welcome. I just feel a sense of opening and relaxing and relief: “Okay, it is safe to share with this person. I can be myself. I can even test out if I can say more.”
“I appreciate knowing what’s going on for you” or similar permutations indicate that the feelings I’ve already shared have been heard and received and held tenderly. They also suggest that it’s okay to share my feelings or experiences again. I think I particularly need that latter message, “I am open to your expressions of pain; it is not too much for me,” because so many people abandoned me in the last few years, and the message I internalized from these abandonments is, “Your distress, and the way you express it, is wrong, bad, and too much. You drove me away with your overwhelming feelings.”
I think that’s another reason I’ve been numb for so long. After hearing the message so strongly to shut up and not burden people with my pain, numbness was a self-protective mechanism.
Having other people tell me not to be numb didn’t help, because I just filed it away under, “More things I do wrong that drive people away.”
Telling me, “Thank you for opening yourself to me. I will hold what you say with care. You are welcome to come back to me and ask if you can share more of your feelings,” helps me feel brave enough to try to open up again.
Enough of you have said often enough in your comments that you appreciate what I say, that I have the courage to write this post and others like it. That I am able to keep trying again. Thank you for that. It has meant more than I can say. It has meant that I am finally able to feel wretched and sad and grief-stricken. This is truly a gift.
– Sharon, the muse of Gadget, and Barnum, SDiT (who gave me lots of kisses today)