Chronic Illness and Us:
PART IIA: Friends Don’t TELL You Anything. Friends Listen
I lied. I started writing the “helpful/UNhelpful” article, and it morphed into this, and by the time I got to helpful/UNhelpful, I’d reached my page limit. So, here is PART IIA of the series: when your friend tells you they are sick.
Usually, when imparting advice or information, it’s helpful to give folks the proper way to say, do, or otherwise execute any given thing at any time, rather than tell them what NOT to do. This installment will be imparting my thoughts on the former. Onward!
There may come a time in your life when a friend discloses to you that they are sick. They have developed an illness or, sometimes, they are dealing with a chronic illness, and they might share recent developments, changes, declines or improvements.
I had a sit-down with a friend a few weeks back. He messaged me, and told me he’d been worried about me. My lack of presence on social media and in real life, my lack of promotional activity w/r/t my work, performing, teaching, readings, etc. had been noted by him, thus his concern.
I was hesitant at first. I usually don’t share my illness and the most recent complications with anyone for a variety of reasons. The biggest reason is that my current condition is not only rare, but even my four doctors, with over one-hundred years of medical expertise between them, can’t for the life of them figure out what to do for me other than manage the symptoms the best they can. I suppose I should feel honored that I am the actual medical precedent for this condition: believe me, it’s not as sexy as it sounds. But I will be immortal in medical journals in the future, even though my name will be Patient A.
I invited the friend over, and found, unfortunately, that I was absolutely right to feel hesitant. People don’t like it when you tell them the name of a condition and they have to Google it, and even when they bother to go that far, it(the definition of said illness) doesn’t come close to encapsulating the entirety of your condition and it(the illness) doesn’t make sense to them. People like things to make sense. So, my friend began talking, and talking…and talking…making sense for me.
He refused to believe that my condition was what it was, refused to accept my personal experience and first-hand knowledge, refused to defer to my doctors’ diagnoses and expertise, and then proceeded to, with his zero-minus-one hours of medical training, tell me what my real problem was. After he made his official diagnosis, he said to me, “Friends don’t tell you what you want to hear. Friends tell you what you need to hear — the truth.” I firmly asserted the facts to him again, told him outright he was wrong, and then faked my way through the rest of the visit until he left me in blessed, yet infuriated and frustrated, silence
I tell you this as an illustrative segue to how you can best respond when faced with the news of a friend’s illness. I will take my friend’s assertion, and re-frame it:
Friends don’t TELL you anything. Friends LISTEN
If a friend confides to you that she is ill, all you need do is listen. Listen actively: maintain eye contact, nod, interject only rarely, with understanding and empathy. Reach over and hold his or her hand, if your friendship allows for that. Some men might not be the hand-holdy type. It’s okay guys; a hand, briefly on your buddy’s shoulder, a quick squeeze, then retraction of said hand will not be, or feel, awkward, I promise.
Here are some great, appropriate responses, which not only allow your friend to feel heard and validated, but also gives you, the listener, valuable insight:
“I am so sorry. What can I do to help you?” * (see Part I of the series)
“Is this something you feel might warrant a second opinion?”
MUY IMPORTANTO: Ask him if he feels he wants or needs a second opinion; do not TELL him to get one. Telling him to get a second opinion does two things: First, you are essentially telling him he shouldn’t trust his physician and worse, you don’t trust him to be intelligent enough to choose a competent doctor. If he is confident in his physician, let him be, and respect that. When faced with life-threatening illness, most people do consult other physicians. Respect your friend enough to let him know you believe he’s capable. Secondly, whether they might need a second opinion or not is not your call. At this point, he might need to trust his doctor for the sake of his own emotional and mental well-being. The diagnosis might be so irrefutable, no second opinion is needed. Additionally, most doctors, when faced with serious illness diagnostics, will in fact encourage their patients to get a second opinion as part of their SOP. Doctors do like to CYA, KWIM? You are neither their doctor nor the sick person — be a friend, not a medical advisor.
(An aside, I will be bouncing between pronouns — he, she, me, us, they — just go with it. We don’t need to be sticklers, do we? I hope not.)
“So what can they do for you at this point?”
Your friend will tell you her treatment plan with as little or as much detail as she feels comfortable in sharing. This is a comfort for her, to review and solidify that people are on her team, working to help her. Feel free to ask follow-up questions — QUESTIONS, not suggestions — about how her medical team is helping her. Asking questions forces the patient to ask them of herself, which then translates into her asking her medical team or physician for more information, or other options she, or they, might explore.
“What is going to happen next?”
This part might be scary for her. There are usually a lot of unknowns, a lot of fear, trepidation, and worst-case-type thinking. Refer to active listening techniques and let her know you’re fully present with her in the moment. Fear can often be quelled just knowing you are loved and supported. Fear makes us do and think crazy things. Fear often drives us to the Internet, which is rife with misinformation. If your friend is doing her own research, listen respectfully. Remind her that public forums, blogs, and anecdotal stories are not fact, so it’s important to pay attention to the source.
“Is there anything you’re able to do to help mitigate the (pain, symptoms, fatigue, soreness, etc.)?”
This is tricky. You don’t want to assume your friend has any control over any of it. Avoid saying things like: “Well, what can we do to get you back on your feet? Chin up! How about a brisk walk? How about a bubble bath? Are you taking Turmeric and Wild Gardenia-plant-bulb oil?” (I will be addressing what is UNhelpful in the next installment more extensively, but these are some examples of what NOT to ask. It’s important that you ask her if there’s anything SHE can do, or that she feels she can do.)
Ask her of what she is capable at this moment. She might not be capable of anything but surviving every moment of every day right now. Be empathetic. Follow her lead and pay attention to her body language as much as her words.
If there are self-care measures she can take, and she knows of them, it will be helpful to know what they are so you can assist her if she wants to try them. Again, follow her lead.
Actually, the doctors tell me that with fibromyalgia, getting regular exercise helps with the fatigue, soreness, pain, and even depression.
“Oh, interesting. Is that something you think you want to try at some point?”
“Did the doctors give you any ideas about what activities would be most helpful?”
“When you feel ready to take that step, what kinds of activities interest you?”
These reactions are important. Don’t immediately become her personal trainer and start ordering and directing her activities calendar. She will feel pressured and maybe, right now, she needs time to rest, process, and get some footing. Simply ask what her plans might be, and what you can do to help, nothing more. Ask questions, always ask. Again, friends don’t tell, friends listen.
If she tells you with enthusiasm that yes, she wants to start an exercise program of some kind, then these are some ways to be supportive without being pushy:
“Well, if you need a work-out buddy, I’m all in! We’ll take it at your pace, no pressure.”
“You know, I work, but I have a treadmill in my basement. Is walking something you’d like to try? I can get you a key to my house, so just say the word. You’re welcome to it.”
“Do you belong to a gym? Maybe we can find an affordable gym to join together. Whenever you’re ready.”
And the always appropriate: “What can I do to help?” (i.e. offer to watch her children so she can attend a yoga class, a water aerobics program, or a simple walk around the block.)
If your friend is dealing with a chronic illness and just needs an ear, listen with empathy and compassion. Being chronically ill is an extremely lonely experience at times. The isolation is terrible. Things we once enjoyed are no longer part of our lives, and may never be again. We are, in effect, mourning, as if a loved one has passed away. We mourn the loss of how our lives used to be, and we mourn, sometimes, what our future may or may not hold. Be sensitive to this. Mourning has many facets: anger, depression, denial, and a pervasive feeling of loss. There are days when I mourn. They don’t come as often anymore, but they come. The important thing is, I do not “live” there.
It is very easy for chronically ill people to “live” in their illness. It’s unfortunate, and not how I choose to be w/r/t my condition. However, for some people, there is an emotional, sometimes material “payoff” in living in their illness. I will be addressing this in a later segment of Chronic Illness and Us.
Here is my attitude: those of us who suffer from a chronic illness may not have a choice about being ill, but we have a choice in how we view it, deal with it, think about it, communicate it, and live with it. In Part IV of this series, I’ll be talking more about chronic illness, disability, and when the ill or disabled person becomes toxic in their illness with regards to friendships.
For my purposes here, I will address things friends can say or do that are helpful to me when I have the occasional feelings of grief:
“I am so sorry you have to go through this. I’m sure the loss you feel is overwhelming. What can I do to help?”
“I can’t imagine how you feel. I love you and I’m here.”
“Do you have someone you can talk to on a regular basis to help you deal with your feelings? As much as I like to think I help, I’m certainly no expert. Have you thought about finding a counselor or support group?” (Trigger alert!)
Go with your gut on this one. Some people, for whatever reasons, are averse to professional counseling — as if you are accusing them of being unable to cope on their own, therefore they are deficient, somehow, as a human being. I don’t think it’s totally out of line to address this gross misconception if your friend is in crisis, or is clearly not coping with her illness in a healthy, productive way. If you are her sole support system — that is too much responsibility for you to take on. Not only are you ill-equipped (unless you’re an accredited therapist), it can emotionally drain you and mar the friendship by turning it into a caregiver/patient dynamic, which is not a friendship at all. A touchy subject, so I’d suggest the Socratic[1] method to address their negative attitudes regarding CBT (cognitive behavior therapy) or other types of support, such as a professionally run support group (avoid lay groups — my two cents a.k.a. been there, done that, no way, ever again).
Negative reactions to therapy is an outdated social stigma implying that therapy is only for the weak-willed and mentally inept. My opinion? The most toxic, mentally inept people with whom I’ve ever dealt throughout my life are, almost unilaterally, people who are violently averse to, and have never been, in therapy. My two cents. (That makes four, if you’re counting.)
Finally, non-verbal communication is frankly superior to all when I feel this way: hold my hand. Put your arm around me or stroke my arm or hair. Hug me. Listen to me. Hold me. I love it when my friend, Elaine, holds me to her and rocks me back and forth, gently. It’s a primal instinct on her part, and consequently, my primal instinct is to feel safe, soothed, and loved. Most importantly, allow me to be emotional without trying to “fix it.”
If I am angry, don’t take it personally. I am not angry at you, and anger is a natural emotion to loss and grief. However, anger is a secondary emotion to hurt. So while anger is normal, it’s also not a good place to live for long.
If I throw my anger your way, that’s not okay. Please respect our friendship and me enough to tell me that is unacceptable. Tell me with gentle words and soft eyes, and maybe hold my hand — remember, I am hurting:
“Hey, I hear how angry you feel, and I would be too. But when you said ___, it felt like a personal attack and it hurt my feelings. I know you’re not angry at me, I’m just here to help. If you feel like you need to be alone right now, that’s okay too. Just tell me if you need space, and we can talk later.”
Your gentle kindness will most likely break us out of our anger, and we will probably dissolve into tears and fall all over ourselves with apologies (and tears are probably healthier for us and where we need to be emotionally, rather than spending too much time living in anger.)
The bottom line is, you can’t fix it for me. I might need to cry, wail, gnash my teeth, shake my fist at the sky and say “why me??” sometimes. As long as I don’t “live” there (again, I’ll be addressing this later) let me have my grief. After a cathartic cry, good stuff happens in your brain. Pain is muted. I won’t bore you with the neuroscience and you can Google as well as I can. But trust me: crying=feeling a bit better.
There’s an appropriate time to gently help me identify and acknowledge what I still *can* do. Use your intuition and good judgment for this, however. It might need to come later, when I am not wracked with grief. Sometimes, I just need to be in my grief, and any attempt to quash it, no matter how well-intended, may make me ashamed of legitimate feelings of loss — with a chronic illness, it would be abnormal to NOT feel grief on occasion, especially when the diagnosis is still fresh. We are in shock. We are frightened. We feel helpless and unsure. Our futures might look drastically different than before our diagnosis. This is terrifying.
What comforts us is validating our grief, expressing love. Don’t try to suppress our grief because you are uncomfortable. When all else fails, listen. No one ever gets their foot stuck in their mouths when their mouths are shut.
(Okay, this is a great point to give y’all a snark alert. I feel it’s appropriate for me to introduce the snark to come, as it only gently hovers underneath my words up to this point, but will soon saturate most of them, since PART IIb of this series will be absolutely drooling, dripping, and oozing snark, so much so, you might wonder if it is indeed the same writer who penned the first two articles. It is. We are one in the same. I will try to make the transition as smooth as possible for you. I will provide ocular-Astroglide to ease your minds into my snark Nirvana. Shall we continue? All right, then. Let’s.)
I spoke of my dear friend last time, who was just diagnosed with prostate cancer. When he emailed me, he gave me a scathing, yet hysterical account, of how horrible this ordeal has been for him so far, along with what lies ahead. I was literally holding my phantom male member, wincing, while laughing (and feeling terrible that I was laughing, thanks a LOT, J). His outlook, his humor, all mitigated any discomfort I had (although I didn’t have much) regarding his diagnosis and subsequent ordeal he’s had to endure. I appreciated his humor, because sometimes, it’s the only way to do it — you laugh instead of despair or cry. (Often we use humor as a social mechanism to mitigate other people’s discomfort with our illness. Fun fact.)
He then invited me to tell him what ail-ethed me. Well, them’s some serious words, there. I mean, there’s the occasional casual query dropped in my email: “Oh, you can’t perform in the (insert literary/speaking event here) because you’re ill? Bummer. What’s wrong?” I know just how to answer those polite, perfunctory questions: “Long story. Let me give you some names of other local writers you could contact.” Another example: “Oh I didn’t know you were sick! That sucks. Feel better soon, K? Is it the flu or something? We had that in our house last week and it was YUCK!” My response: “Long story. How are you doing?” Rarely does anyone persist once they hear it’s a long story requiring time, effort and giving an actual fuck. (Yes, the “f” bomb now appears. You should be shocked, frankly, that you haven’t been subjected to it until now. If you knew me at all, you would be — shocked, that is. Well, that door’s open now, so fair warning. More to come.)
But my friend, J, he made it clear: he gave me the ugly, wincing, eye-watering, ass-clenching details of his “enhanced interrogation;” ergo, he wanted MINE.
Ask and ye shall receive.
I would say, conservatively, my email to him would be classified as a short novella. Because to understand my condition in its entirety and complexity, that’s what it takes. Based on his email’s tone — a macabre mixture of horror mingled with hyperbole and gallows humor — I followed his lead and went nuts.
You can read all about my “nuts” in the next installment, coming soon to a Medium near you. (Eh, it was a softball. And no, I’m not going to make a second joke based on the word I just used. Once is enough — and a perfect segue to the next article! Wow that was Astroglide smooth…)
Peace to you —
J.A. Carter-Winward
COMING SOON:
PART IIB: Helpful v. Unhelpful. One of These Things is NOT Like the Other a.k.a. The Helpful Help Given Helpfully That is So Incredibly UNhelpful, it Actually UNhelps Way More Than Helps
Footnote 1
[1] Questions for clarification: “Why do you say that?”
Questions that probe assumptions: “How could we look at that differently?”
Questions that probe reasons and evidence: “Do you have any examples?”
Questions about viewpoints and perspectives: “What’s another way of looking at it? Is there something about this that feels unsafe or frightening to you?”
Questions that probe implications and consequences: “What do you think would happen if you tried it? What’s the worst that could happen? What’s the best thing that could happen?”
Questions about the questions: “What do you think my motivations are?”
Source: The Six Types of Socratic Questions, www.umich.edu
along with:
Source: my wonderful, lovely mind.
