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#Longread: The Emotions of Thinking and Talking About Illness

I’ve written and posted before about hiding our pain to spare the feelings of others, and many similar topics of conversation. I have also written about the emotions of guilt, resentment, and burden that can accompany a lifelong illness or disability.

I decided to revisit the topic and reframe it in a couple of new ways.

The first is in this context: a friend of mine, Hope Cross Dezember (a.k.a HopieHippie,) is married to a man named Steve Dezember. Steve has ALS, also known as Lou Gehrig’s Disease, and the ups-and-downs of their storied love has been chronicled in a documentary called Hope For Steve, as well as on social media, Hope’s blog, and in several magazines and media outlets.

Recently, Hope posted a compelling blog entry about her occasional struggle with feeling “bitchy” for somewhat resenting her husband’s condition. She also spoke about realizing that our reality, and not the front we put up to the public, is what is truly important. After all, that’s what is REAL.

You may think that I, as a patient, would have been offended by her words about being resentful, but it was, in fact, quite the opposite. Reading her point of view was refreshing. I appreciate honesty.

After all, it isn’t easy for patients *or* our loved ones/caregivers/spouses/family to deal with a lifelong illness or disability … especially one as serious as Steve’s. Instead of sugar-coating the situation, it was  nice to see Hope share her true feelings in a real, raw, honest way. Do her feelings negate or minimize her immense love for her husband? No. Do they tarnish or delegitimize their relationship or her role as his wife and caregiver? Absolutely not. Do these feelings make her a horrible person? No, they make her human. Not a bitch.

In a comment on Hope’s Facebook (that I later posted to my Arthritis Ashley page,) I told her that I thought it was good that she wasn’t being fake. Too often, it seems as though anyone who deals with an illness, disability, or other adversity, are almost expected to be MORE “positive” and optimistic, happy, and upbeat than the average person. She, like many others, agreed with me that it does actually seem this way. This is a ridiculous notion — and an unfair one.

Not only is it unhealthy to keep your feelings bottled up, but it is unnatural to live under a guise that everything is perfect, especially if you are hurting or sick, or are helplessly watching someone who you love fall ill.

In today’s world where we see the best of everyone’s life on social media, it is easy to buy into that facade, to compete and compare and think that everything has to be coming up roses all the time. It is somehow ingrained in us  — ESPECIALLY in women — that it is bad or undesirable to express any emotion that isn’t perfect or pleasant to those around us.

People will commend sick folks or their partners as somehow being brave or inspiring just for living their lives and existing in their own reality. People will applaud us “extra” if we do so while slapping a smile on our faces all the time. But do people ever compliment us for just being honest? For being REAL?  For just getting through the day-to-day struggles?

No — in short, they usually do not.

Someone close to me recently said they didn’t like to be around people who were all “doom and gloom” all the time. I did not in any way judge them for this comment. After all, I completely agree: neither do I.

I do not think that toxic, negative energy and bad vibes are healthy for anyone. I think that a lot of people overdo the whole “Debbie Downer,” “Negative Nancy” thing. Of course, no one likes to be around people who are consistently complaining, catastrophizing everything, and being a nonstop source of worry, morbidity, whining, and gloom. No one likes to be around people who are persistently pessimistic, angry, or ungrateful.

But, the other end of the spectrum can be equally draining. My response to this person was: “I agree, but I also don’t like being around people who are obviously fake. People who fake being happy 24/7, people who are overly cheerful and who act like their lives are perfect, because I don’t feel that it is authentic. No one is completely happy 100% of the time, and no one’s life is perfect.”

I value authenticity and transparency.

I like to keep it real.

That’s just how I feel. Literally no one has a perfect life that is without problems or struggles. We are allowed to talk about those things as much as we’d like. Some may feel that it is detrimental to focus on the bad things, and I agree. But simply addressing these things or venting about them is not “focusing on them” or “giving them too much life.” It’s just called honesty.

In respect to Hope and Steve’s relationship, (and everyone else’s,) no one has a perfect marriage, either. And when people are sick and suffering, or caring for someone who is, it can feel like immense added pressure to always feel like you have to be happy and upbeat to appease the people around you.

And that simply isn’t fair. When you are sick, you don’t need any added burdens, such as feeling like you are obligated to be pleasant and bubbly 24/7. It’s kind of like when strangers — especially men — tell women to “smile more!” (What IS that, anyway? Why? Do YOU have to walk around smiling and looking pretty all the time? C’mon, man.)

What I appreciate is honesty. istock_000023101657_double-845x321

You can be a “positive” person and have a hopeful, optimistic outlook while still being real. You are allowed to share your feelings, even if they make other people uncomfortable at times. You don’t have to gloss over your reality to avoid awkwardness. You don’t have to keep real stuff bottled up becuase you think that expressing those emotions somehow makes you appear as weak or “less than” or flawed.

… But you also don’t have to harp on or exaggerate your sickness or disability, or milk it for attention or pity, or complain all the time.

Like many things in life, figuring out how to talk about your health journey or the health journey of a loved one is a fine and delicate balance. I believe in balance in many areas of life. Balance, mindfulness, consideration, and moderation are important to me. The attitudes we take towards sickness are one of the areas where I feel balance is very much a necessity.

Personally, I don’t like when people baby me, or single me out because of my health problems. I don’t want that to be my main identifier in life. I am more than Arthritis Ashley. At the same time, I d0 need people to be cognizant of the fact that I do face certain hurdles and limitations that they do not. I have certain needs that some people may not. I do need people to remember that I have medical problems, and therefore, that I face certain limitations and what some people may call shortcomings. I need people to remember and understand that I live with illness, and that it isn’t always easy, and that I am sometimes suffering greatly, without making a a big deal of it, or treating me as “less than” anyone else. I don’t want to be singled out or pitied, but I need my situation to be recognized, validated, and understood. Don’t talk down to me or speak in platitudes. Just treat me like anyone else, but recognize that even if I don’t look it or seem it to you that I have medical problems and physical limitations of which you need to simply be aware and mindful.

I don’t expect a healthy person to understand what it feels like to live with pain and sickness every day. But I do expect respect. And I expect people to give me the space and bandwidth and patience needed in order to explore and express my own feelings and my truths and my experiences without judgement from those people.

I don’t need men to mainsplain to me that they “know my smile is fake” (a certain doctor has said this to me more than once and it just isn’t true. I can be in pain or feeling unwell and still smile. I am a generally happy person and love my life,) or tell me that I’m “lying” when I say, “I’m okay” or “I’m fine” when I’m asked how I’m doing. (Sometimes I may be fibbing with this standard answer, as many people both healthy and unhealthy are, but sometimes the truth is just that: I’m fine. Because, you know what? I always am. Even when I’m suffering, I’m still fine. I’m strong. And no one gets to tell me my feelings at any given time.)

c34f98625763a911c2c8ca7f9049c235.jpgI’ve had people tell me that they “need me to get healthy” and “they like it when I’m happy and goofy.”  I have had someone note that I “look sick without makeup” but “fine” with it on.

Well, yes. I need me to be healthy, too. And I like when I’m happy and goofy too. But my reality is that I can’t always put on an act to appease other people. I cannot overextend myself to make someone else happy, at least not all the time. I do it a lot. I will continue to do it, too, because that’s what a lot of us — especially women — tend to do.

But as they say, you cannot pour from an empty cup. So I sometimes need to take care of myself first before responding to an email or a text, going out of my way to be jolly, or making sure that I have my makeup on.

I have heard lovely, kind, caring people offering commentary not on my health situation  per se but on the medical situations of others. “Oh, they’re so miserable all the time,” or “I wouldn’t be posting about that on Facebook,” or “he just needs to be more positive.”

Well, let me just say this:

People who make these kinds of comments have a certain level of privilege. Now, we’ve heard a lot about privilege in recent years due to our election and the Black Lives Matter movement, among other things. White privilege exists, male privilege exists, and if you don’t think they do, please read up on these issues. But another privilege exists, too: this is the privilege of the healthy and/or able-bodied.

You have the luxury to talk about how other people should think about or talk about their illnesses. Because of your privilege you think you have the right to judge how people are coping emotionally with their illnesses. You have the privilege to pass judgement on a woman’s complex, complicated feelings of being a caregiver for her terminally-ill husband…because it isn’t affecting you.  You have the privilege and the luxury of saying this is how YOU would deal with this, or that. Because, let’s be clear about one thing: it is a privilege to be healthy and able-bodied. It is is a luxury to have good health and to NOT have to worry about sickness or pain EVERY SINGLE DAY. As they say, health is the ultimate wealth, and it’s true. It’s easy to be a “backseat driver” or an “armchair quarterback.” If you’re not driving the car, and you’re not coaching the team or playing the game, well, it’s easy to say what you would do or what people should do.

The fact of the matter is that you don’t know how you’d react if you were in someone else’s situation, medical or not. Empathy is putting yourself in someone else’s shoes and we should all strive to do that, but the truth is, we can only ever just try. No one can physically live someone’s life You don’t know what someone’s existence feels like to them. So you should be mindful in choosing you words and your reactions. You should be careful when passing judgements, if you have no right to judge.

Yes, most of us like being around people who are upbeat and happy. Many of us enjoy when people are pleasant. I dare say that the majority of people enjoy those who have a pleasant demeanor — there is no denying that. We love a sense of levity and humor. We love an underdog story. We love a good, inspiring, heroic story of bravery. We all love a great love story. But mixed into all of those things is humanity. People are real. People are human. People are flawed. People are at the center of all of it.

Listen, I totally, wholly, honestly, 100% believe in the power of a positive mindset and a positive attitude. I think positive thinking helps and I think that positivity rocks. But it isn’t something that is sustainable all the time without allowing ourselves to also feel the other end of the spectrum. Living a positive life while chronically ill is an evolving journey that we always have to work at. Continually. Every day. Living a life that is positive and full takes work — as all good things do. Being positive doesn’t mean that negative feelings don’t occur or that bad things don’t happen. It means you learn how to cope with them, how to deal with them. Sometimes the way we deal and cope is by talking through these bad things and negative feelings — even if it is uncomfortable for us or others.

It is the EASY way to only choose to present the good parts of our lives and our 147225-live-your-own-lifepersonalities to others. It is the HONEST way — and the difficult way — to be vulnerable enough to share the whole encompassing reality of our existence: good, bad, and ugly.

For those of us who are ill or caregiving for someone who is, we know that it isn’t always inspiring or heroic. Many days there is nothing brave about it. We are just living our truths, and living our lives in our own ways as best we can. For a lot of us, our own existence is all that we know. So I ask that people — especially healthy people, non-caregiving people, or people without a proverbial “horse in the race,” — refrain from making comments that invalidate or diminish or shame people who are sick or in pain.

We’re entitled to our emotions. We are entitled to express those emotions how we see fit. Some of us, like myself, and like Hope & Steve, are more inclined to do so publicly, and, for the most part, in a “positive” fashion. Others will keep things more private, or may seem more melancholy in their presentation, but that doesn’t mean that they are wrong. No one has the right to judge or shame a person for living their life and coping as best they can. Choosing to distance oneself or disengage from a person because their energy brings you down is one thing, and that’s fine. But criticizing people for being human, or looking past their suffering only because it makes you feel bummed or sad just isn’t right. We all would do well to step outside of our bubbles of privilege and comfort and judgment now and then. Instead of criticizing someone for being miserable, or gossiping about someone for whining, or assuming a woman is a bitch or attention-seeking for sharing her feelings in a cathartic way, maybe ask yourself how you can help that person.

Instead of berating someone for being “negative,” maybe look within and see if you can inject some happiness, positivity, and joy into their life. See if you can help.

Maybe they won’t respond. A lot of people are just hard-wired to be negative, toxic people. There are people out there who are mean-spirited, curmudgeonly, passive-aggressive, downers. These people can suck the energy right out of you, and can manipulate any situation to bring you down, too. As they say, misery loves company.

But some people — some people are truly hurting. They may be clinically depressed, or, they may be silently suffering with a loss, or a personal problem, or a heartache that you don’t know about. You are not entitled to know everything about someone’s life no matter how close you are to them. They may be hurting from an invisible illness or immense physical pain. They may have gotten terrible medical news that they haven’t yet told you about. And they may be upset about it. They have every right to be.

You don’t know why someone is sad or angry or why they are lashing out or feeling down. Sometimes animosity stems from fear or stress. Sometimes someone is just having a hard time. I think instead of beating them up for it, we should lend a hand or a shoulder to cry on.

In closing, I’d like to applaud Hope for writing the blog post that she did. I’d like to applaud all health bloggers and advocates and caregivers who “keep it real.” And I’d like to applaud those who do try to keep a smile on their face through it all — because it is isn’t easy. Nor is faking that it is.

I want the people in my life to know that I am happy. I know that I have a good life. I am grateful for a lot. I know things could be worse. But me sharing my pain and my suffering and my journey is not usually complaining. (Sometimes, it is. And that’s okay. I’m human.)

Me sharing all of this and occasionally “venting” is simply me sharing my own life and my own truth. I can’t fake who I am, or hide and sugar coat things to protect other people’s feelings. That is only doing a disservice to myself, and in doing so will only do a disservice to all of you. If people like myself, and Hope, and countless others are made to feel that we have to keep up a particular “image” in dealing with sickness, then we are going to make ourselves sick.

Being fake about the realities and nuances of a life of illness or disability also further perpetuates a negative stigma and unreasonable expectations towards a person who is dealing with a medical issue.

A recent quote I read, by author Lysa Terkeurst, said that “it is impossible to hold up the banner of victim and victory at the same time.”

To some extent, I wholeheartedly agree with her.

But at the same time, some of us are victims of circumstances that are beyond our control. Whether or not we are a victor in the end is not determined by whether or not we were a victim but rather in how we coped with those circumstances.

The way people in our lives talk to us and talk about us in regards to our health is a part of the puzzle that helps us figure out which path we will stay on: that of the victor, or that of the victim. And sometimes forcing us to hide our true emotions — whether inadvertently or on-purpose — sets us back a few steps as we strive to be the victor of our own lives.

So please, be there. And show you care. But please also let us be real, and feel what we we feel.


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