Top 10 Favorite Healers (on my interstitial cystitis journey)

The internet has transformed the experience of a chronically ill patient. We are no longer bound only to doctor-patient experiences, and, for someone with a chronic illness that carries with it a history of doctor abuse, that’s a very important concept. When the doctor prescribes medication that only makes you feel worse or not better at all; when the doctor prescribes medication that will cause organ damage; when the doctor dismisses you and claims there is nothing wrong with you, there is an alternative: meeting people with similar problems on the Internet and trying to sort out what it is you should do next.

When I was diagnosed with interstitial cystitis in 2012, I soon became hopeless with excruciating pain caused by an “incurable” disease. Despite my skepticism of alternative medicine, I did not have another option, so I began to “collect” healers on the Internet who inspired me to learn more about the relationship between nutrition and autoimmune disease. (It is not officially known for sure that interstitial cystitis is an autoimmune disease, but that is the most prominent theory about the condition.)

Here is a list of healers on the Internet who I highly recommend following. I do not agree with every claim they make, and I do not believe in any miracle elixir, but I do believe in role models and trying to focus on what healing means to you. Thankfully, my interstitial cystitis is much less severe today, and I am able to live mostly free of bladder pain as long as I am careful with what I eat. I could not have found my path without these outstanding individuals, so I wanted to take the time to share them all with you:

Melissa in the Raw:

Melissa was the first person on the Internet who inspired me, and she is the reason I quit seeing an abusive urologist and started focusing on natural healing. In her YouTube story, she tells about her painful and agonizing experiences with doctors and her focus on healing from IC. In her belief that she could heal herself, she started a radical movement, which led to the Facebook group: Healing Interstitial Cystitis Naturally .

Wendy Cohen

Wendy Cohen is the author of The Better Bladder Book, which is one of the most recommended books on the Healing Interstitial Cystitis Naturally Facebook group. Many people also like the Detox Miracle Sourcebook by Dr. Morse, but I found that to be a little too woo-woo for me. I couldn’t imagine myself living on the top of a mountain and only eating organic citrus for three months, so Wendy Cohen’s approach of eating an anti-inflammatory diet free from gluten and dairy spoke to me much more.

Jessica

Jessica is a frequent post-er on Healing Interstitial Cystitis Naturally Facebook group, and she shares her journey on YouTube. Many people in the Facebook group consider her among the most influential members because she works hard not only at her own healing but feels compelled to help other people.

 

Sunny

Although I personally am not a raw food enthusiast, Sunny perfectly displays the spirit of a fighter. She talks about how people treat her like she is crazy for criticizing the Standard American Diet and for emphasizing that you need to eat differently to heal.  Many IC patients seem to be a big fan of Sunny’s work, which is influenced heavily by Dr. Morse.

Brittany from Montreal Healthy Girl

When I first developed IC, Brittany had not yet found a YouTube presence, but I would have loved to have her videos then. She is so well-rounded and doesn’t preach any one dietary approach. She also believes in the power of nutrition to heal and is a chronic illness survivor herself. People on the Healing Interstitial Cystitis Naturally Facebook group often post her videos to provide support for new members.

Noelle Janka

I recently stumbled upon the Facebook group Spoonie Superstars, and I love it! Noelle Janka started the group to support her work as a life coach for people with chronic illness and disabilities. Noelle is a chronic illness survivor and knows the extent of suffering that people are going through and the need for someone to understand. Having had many negative experiences with therapists, I can testify to the fact that we need more mental health and life coaches to specialize in chronic illness and disability care.

Gavin

I might be a bit biased because he is my roommate and one of my favorite people ever. He leans paleo in his approach to healing and has an extensive herbalism background. He has more knowledge about the ingredients in food and how those ingredients are derived than any other person I have ever met.

Emma

I am also biased on this choice because she is a former roommate. She is an outstanding herbalist who also works as a doula.

Dr. Arora

I was very fortunate to find an alternative medicine doctor who accepts my insurance. Dr. Arora agreed with many of the things I had learned about nutrition from the healers above. Dr. Arora was spot on when she told me which supplements to take. My health improved substantially, and I still take many of the supplements that she recommended, though dietary changes were more crucial for me. Members of the Healing Interstitial Cystitis Naturally Facebook group often suggest seeing a naturopath. New members typically ask, What is a naturopath? Basically, a naturopath is a holistic doctor who understands that there is a link between gut health and immune system function.

 

 

A Few Disclaimers: 

The author of this blog is against weight loss/diet culture/body shaming and has not shared any of this information with the intent to promote weight loss/diet culture/body shaming. The author of this blog would like to acknowledge that financial/class issues as well as other marginalizing experiences may affect the accessibility of following these healer’s advice. The author of this blog is not claiming that all cases of chronic illness can be cured. 

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Beyond Bourgeois Healing Tropes

Almost everyone has a shocking food story. My roommate said she once didn’t know that Ramen noodles were supposed to be a soup, so she would mix in the flavor packet, scrapping the noodles raw like sand. When I went vegan, I used to eat an entire pack of Oreo cookies because at least Oreos were vegan. I used to go days or weeks without a vegetable, yet described myself as vegetarian.

Today I have been gluten-free, dairy-free and mostly processed foods free for 3 years, a radical response that I needed to take after suffering excruciating pain from autoimmune disease. (Please see my other blogs if you’re curious about those issues.)

I am left with so many What ifs. What if parents had enough money not only to raise children but to feed them healthy food? What if there is a relationship between trauma and chronic illness? How do you even individualize trauma when half of all American children are living in food insecure homes? What if the economy valued people who prepare and serve food? What if my spending more time in the kitchen wasn’t looked down upon as being servant-like? What if we had real nutrition education involving public debate rather than government propaganda?

How do I suggest changing one’s diet away from the Standard American Diet (SAD) without invoking classiest, ableist and other oppressive undertones? For many suffering from eating disorders, it is hard enough to simply eat let alone try to understand the complex relationship between nutrition and health. And even if one eats healthy foods, genetic and environmental factors can still negatively affect health.

Yet I find myself gravitating toward this bourgeois “whole foods” capitalist movement because I agree that eating foods as they come from the Earth is a good idea. However, it’s difficult to prepare all my own foods, so I end up under-eating or eating less than ideal options almost every day except for the weekends when I spend a lot of time cooking. I feel like I’ve suffered enough physical pain for one lifetime, and I need all the privilege that I can get to help me cope with my life. The political complexity of using privilege to survive is not lost on me, and it does not come without considerable guilt.

On a path to try to heal from chronic pain, I finally relented to try a low-cost acupuncture option. Everyone and their brother Joe tried to convince me to do acupuncture, so it became a way of dismissing my reality by saying I hadn’t tried hard enough to get better. Certainly, I have tried very hard to recover, from radically changing my diet to moving into a co-op house dedicated to being gluten free and dairy free, to coping with my troubles through writing and art. I have done acupuncture four times so far, and I can’t tell for sure if it is helping.

I see people all around me destroying their health by never eating vegetables, drinking too much alcohol, or obsessively eating processed foods. It’s because they have health left to destroy, I think to myself. How wonderful to not get on people’s nerves, to eat like an American and feel welcome at the table, but more and more people are not welcome at the table in this culture of poverty coupled with disordered eating in which critics who believe in healing are labeled elitist and out of touch with reality. When we demonize the healer (or someone who is on a healing journey), then how will we realize that the real nightmares of oppression live on in the corporate food lobby and the higher prices applied to people who try to fight against chronic health problems with better nutrition?

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Food & Friendship: Learning to Live with Dietary Restrictions due to Chronic Illness

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In this photograph, I have successfully brought together two very good friends from different walks of life. I met Kelly in Hammond, Louisiana where we both attended elementary school, and I met Heather at Hood College in Frederick, Maryland. After college, Heather eventually moved to Seattle, and Kelly, wanting to get away from Hammond for a while, also moved to Seattle. There you have it! Two of my best friends in life ended up in the same city, and I was visiting family in Portland, which meant that Seattle was a short train ride away.

What I didn’t tell anyone at the time was that, on one of the train rides to Seattle, I broke down in tears in the bathroom. I don’t remember if that happened during the time this photo was taken or the second time we met up, but, nonetheless, my future had big changes in store for me.

I was diagnosed with a painful bladder condition called Interstitial Cystitis in August of 2012 after suffering for a few months with what I thought was a UTI. There was no presence of bacteria in my urine, however. It turned out that Interstitial Cystitis (IC) can cause symptoms of severe UTI. I also struggled with chronic chest pain (Costochondritis), chronic dental pain (neuralgia), and chronic back pain. Doctors said they didn’t know what caused IC and that it was incurable. The pain was unbearable.

After I did more research, I found out that one of the most prominent theories about IC is that it is a systematic autoimmune disease where your body attacks its own healthy tissues, including the bladder lining. One of the most successful treatments for autoimmune diseases is to do some kind of dietary intervention by eliminating trigger foods like gluten, dairy, sugar, and processed foods. These kinds of foods are difficult to digest or have an inflammatory effect. I was desperate to feel relief from the pain, so I got on board with the new diet, which wasn’t easy for someone who grew up sugar-obsessed. I could devour an entire King Cake while searching for the tiny plastic baby. I wasn’t exactly a rabbit eater. I didn’t even like salad.

Enough about me. It turns out that both of my best friends (and my best friend’s mom) would know exactly what I meant by having health problems and needing to eat differently. Kelly had struggled with her health since 3rd or 4th grade when they put her on Ritalin for ADD. She explains what happened next:

“When I got into 8th grade I started having chest pains and visited a cardiologist, the long and the short of it is I ended up spending most of my 8th grade year at home and started homeschooling. Ok, what have I been diagnosed with? Honestly, I’ve seen so many doctors and they all have something different to say it’s hard to keep up. When I saw my 1st Cardiologist he told me I have tachycardia, which is a connective tissue issue and causes low blood pressure. When I was in College I saw a different cardiologist, since my other one moved, and he diagnosed me with something else but basically told me as long as I exercise regularly I shouldn’t have any issues. When I came home to the states, I saw a naturalpathic doctor, which being few and far between in Louisiana tends to be very expensive(but worth it). She told me I have a DNA mutation that causes my body to block folic acid, so I’m not getting the amount I need. I also have a vitamin b12 and b6 deficiency, thyroid issues, etc. These all can cause the feeling of being tired all the time, concentration, etc. She immediately put me on vitamins etc to help.  She told me that alot of people that get diagnosed with add or adhd are misdiagnosed because it’s actually in imbalance and they aren’t getting the vitamins and minerals they need! She also tested my blood type, since she’s found that the “Eat right for your blood type” has worked for her patients. I found out that I actually need to be on the Paleo diet.”

Kelly also suffered a severe UTI while studying abroad and was put on antibiotics for months, which caused a severe overgrowth of yeast. As a result, she had to follow a strict diet, which she explains:

“I live in a house where there are non meat eaters, but not as strict on food as I am so it’s difficult.  I basically still don’t eat gluten, dairy, carrots, mushrooms, sugar. Every so often I eat fruit, but ones low in sugar I stick to blueberries mostly. I eat meat, chicken, and veggies.”

Heather has also seen a naturopathic and teaches her son about the problems that gluten and dairy causes. I was surprised when we went to dinner to hear her young son talk openly about having problems with gluten. When I was his age, I had never heard of gluten. I didn’t know anything about a healthy diet. In elementary school, I drank chocolate milk from a plastic bag. It was like a Capri Sun because you had to jam a plastic straw through it and hope you didn’t jam the straw all the way though creating a leak. I would only drink the chocolate milk and eat the warm roll. I rarely ate any other food for lunch. Basically, I specialized in eating gluten and dairy. Pizza and ice cream were my favorite foods, and I’d still be eating them to this day if it weren’t for wanting to shut off excruciating pain that was ruining my life.

I often feel like a food freak because I can’t eat gluten, dairy, corn, soy, processed sugar, white vinegar, processed citrus fruit and many other foods. But when I think about other people around me, I realize that we are all fast becoming food freaks. Chronic illness in young people is on the rise, especially autoimmune disease. (Read The Autoimmune Disease Epidemic), and the failure of modern food to be safe and free of chemicals, genetic engineering, and environmental pollution coupled with a lack of caring about the nutrition of children has created a generation of chronically ill people.

Kelly said that her family generally ate healthy when she was growing up because her father has a higher degree in nutrition and health sciences. No single cause can explain every case of chronic illness. Recently, the World Health Organization has blamed processed meat on higher rates of colon cancer. But what about the other food that the bacon-eaters were eating? There are too many undefined variables. Who knows!?

When you experience mysterious health problems and doctors are unable to help you, you have to turn somewhere. More and more people are turning to dietary changes, though no one should be forced to do so. Chronic pain and chronic illness are personal, a private world of agony felt in our own bodies. Nothing has brought me more relief than eating differently and having friends who understand why I need to do that for my health.

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My Response to The Politics of Privilege-Checking, and how to move toward collective action

In the article, The Politics of Privilege-Checking by Sharon Smith, the author argues that we need to build a mass struggle rather than offer our individual identities to no end. Most activists have sat in a circle of others and listened to each person talk about their identity. Of course, useful conversations can come out of this kind of organizing, but simply talking about identity in terms of ways that you are privileged and ways that you lack privilege ends the conversation there without any further collective action to oppose the institutions that uphold privilege and oppression.

Smith says that we must build a connection to working-class strategy to create revolutionary struggle, and, unfortunately, a lot of political theory, like post-modernism, got away from working-class strategy by focusing on subjectivity and individual identity instead of class struggle. As an activist, I completely agree with the limitations of identity labels, though I think the idea of raising consciousness is subjective, and I struggle with how to connect each individual to a larger mass struggle. I don’t think I’m doing a good job of connecting myself to the collective struggle, and that’s exactly what this blog is about– a growing sense of failure to fully connect with activism.

I go to protests, marches, speak-outs, meetings with fellow feminist organizers, radical political events, etc… I write poetry. I work on building a voice of resistance to a society steeped in violence and oppression. My participation in activism is volunteer work. It’s unpaid labor. It’s an extracurricular. It’s work I do outside of employment. Karl Marx said that capitalism exploits the worker by robbing her of her value, whether that means getting paid nothing or getting paid too little. In other words, when we participate in activism (unpaid labor) we are subject to the exploitation inherent in the capitalism system.

When I was sick for a long time, I couldn’t participate in activism. I stopped going to feminist meetings. I stopped going to radical political events. I stopped marching etc.. Why did my activism end when my health plummeted? Because my relationship to activism has always been individual, not collective. I give my unpaid labor to organizing, and, when I had no individual labor to give, I had nothing to use to connect with the mass struggle. Of course, I still went on Facebook and signed petitions, which helped me stay connected, but I felt frustrated that I couldn’t be more connected.

How does someone who cannot afford to give their unpaid labor participate in activism? I have never been able to organize in such a way that offers a solution. I have heard stories about unions and strikes, which sounds very collective in a genuine way, not falsely collective in the way that I try to be in my individual efforts. I would like to already be collective, but, like most people, I have never held a job that was unionized, and, as someone who sees work as a means to survive rather than an ends to fair and ethical relations, I can’t imagine feeling collective and included in employment.

So, when Marxism says to build a larger mass struggle of the working class, I don’t disagree, but I don’t know how it’s going to happen when I keep struggling individually, giving my unpaid labor to activism, and hoping to build a larger mass struggle. Whether you are acting individually or collectively isn’t based on how you feel but on how you relate to the economic system. Individuality is a unit of capitalist exploitation. I know that I am a unit of exploitation even when I participate in struggles that are supposed to be collective. That’s why when I got sick, I had to stop trying to be collective. Activism had to take a back-seat in my life.

Instead of privilege-checking, activists should focus on their relationship to activism and how to transform that relationship from individual to collective struggle. We should be honest about the limitations rather than romanticizing a false collective because it is the false collective that capitalism creates as a mirage in a desert of neoliberalism. We have to realize the ways we are pawns doing unpaid labor, and we have to realize that this realization will never be enough to address the gross inequality of wealth without real collective struggle.

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Dealing with Diet Culture and Gluten Intolerance, one feminist’s struggle

Diet Culture makes millions of dollars off of convincing Americans that the key to a good life is losing weight and being thin. One of the tactics of its profit-making scheme has been to propagate gluten-free diets, turning gluten-free foods into one of the up-and-coming industries. In some ways, as a person who had to go gluten-free to treat mysterious health problems, I benefit from Diet Culture making a profit from the gluten-free industry. For example, now people are becoming more familiar with what gluten-free means, and it is increasingly common to find restaurants that offer gluten-free menus or accommodations.

But does it disturb me that this increasing public awareness stems from a for-profit motive rather than a concern about human life? Yes, of course I am very worried about my story becoming appropriated as a contribution to fat shaming and fat phobia. I am open to suggestions about how I can prevent my story from becoming a weapon. I do not think that silence is the answer. I do not think that the answer is to say, Gluten-free, that’s stupid! I do not think that it is fair to ask me not to tell my story because, when I do tell my story, I stand up for patients who have experienced mysterious chronic illness and who have been treated unfairly by doctors.

To be a chronically ill female (most people with my illness are female) is to be in an oppressed position where doctors dismiss you as hysterical, the medical industry refuses to research anything about you unless they can make a profit, and even everyday people say that you’re just dieting because it’s a fad. Food intolerance has nothing to do with diet. Did that kid in middle school who had a peanut allergy say that she was on a ‘diet’? No, that would be awkward phrasing. However, my food intolerances are subjectively determined, which means I realized I had these food intolerances by doing careful research and experimenting with what foods increased my pain levels.

When people tell me that it’s just a fad, I feel like I can’t even begin to explain how I have fought through the hell of my body to get to a better place. I had to believe in healing. If I couldn’t believe in healing, I would have rather died. Healing is different than cure, however. Healing is doing everything that I can to get better. What can I do to get better? Is a question that assumes one can get better, which is not the right approach for everyone with chronic illness, but is sometimes the right approach, especially when a doctor claims that you’re beyond help and then you prove them wrong. Patients are powerful. Patients are powerful. I chant that to myself so that I can sit proudly in the chair at the doctor’s office and be a voice of resistance as well as education for those who still naively believe that western medicine has their interests in mind.

Should I not talk about the toxicity of American food because for so many people in this country just having any food at all is a privilege? Of course not. I must realize the intersectionality of why our food is toxic and why people go hungry even in a country as rich as the U.S. The intersection is the for-profit system that sells the same processed, genetically modified ingredients to us in different colored boxes while severely increasing prices on fruits and vegetables, for that is the same system that ensures the gap between rich and poor.

Should I not talk about the relationship between food intolerance and the toxicity of American food because so many people in this country are under attack from fat shaming and fat phobia? No, because capitalism is making money off of feeding us toxic food, keeping us sick, and convincing us that some bodies are ugly and unworthy.

For the record, food intolerances have been linked to genetically modified crops and toxins in processed food as well as the larger environment. Don’t take my word for it, check out the book, The Autoimmune Disease Epidemic, or read about the effects of glyphosate, the main ingredient in Monsanto’s Round up Ready.

Anyway, my point is that I need to have an outlet to talk about the political implications of my food intolerances in the context of chronic illness. I am becoming more and more afraid of finding the right outlet because I do not want to trigger feminists who are fighting against Diet Culture, and I do not want them to trigger me either. While I have felt triggered by their trivializing the effects of gluten intolerance on public health, they have felt triggered by some of the resources that I have posted on Facebook in favor of gluten-free diets. I agreed with these feminists criticisms because the websites are funded by the diet industry, so they are absolutely right to be angry about any propagation of diet culture, especially by someone like myself who is a feminist. I would like people to understand that they are also used as a weapon against me, and I am used as a weapon against them, which explains how people devoted to anti-oppressive spaces in turn perpetuate oppression even when their minds and hearts are in the right place. My hope is that by drawing awareness to this issue, we can stop being weapons and start being comrades, though I feel there is a lot of work to do on both sides.

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How Being Chronically ill and Queer Intersect, or Why do I have to defend my existence?

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I recently started a Facebook Group called, Gluten Free Queers, as a way to honor the intersection of a gluten-free lifestyle with one’s sexuality and gender identity. To me, this is a branch of the myriad ways in which chronic illness and queerness intersect. I also put together a manuscript that includes many poems about the intersection of chronic illness and queerness. It is fair to say that I find this topic valid, important, and true to my life experiences; however, I have received negative feedback questioning whether this intersection even exists, which has been incredibly infuriating for me.

How dare you question whether I exist? I think to myself, knowing that whoever would question the intersectional nature of these issues probably wouldn’t understand that kind of reply or the origin of my anger and frustration.

For some reason the same people who question the relationship between being chronically ill and being queer have no trouble understanding the relationship between gender and chronic illness. They are no stranger to mostly men as doctors dismissing their pain or upholding the capitalistic/paternalistic pursuit of for-profit pharmaceuticals.

Then why is it so hard to understand that queer people in chronic pain have unique experiences of how these two struggles collide? My own chronic pain has reinvigorated self-doubt, shame, dissociation, and confusion, which I first intensely felt due to my growing sense of being queer in my late teens. I felt so overwhelmed and unable to process my sense of my body and self that I floated around on the ceiling, separated from myself so severely that I wasn’t sure what my own limbs felt like or where they were located in relationship to me. I would fall over for no reason. I would end up places and wonder how I got there. I lived disoriented, fragmented, and scared.

This fear was my first language for a sense of gender and sexuality that I had no other framework for. As I type this now, I am still trying to teach myself to unlearn this fear. I need to speak a new language for myself, one that does not rely on panic for representation. When I found out that I was chronically ill, kind of like being queer, I had known but repressed it for years. I had often wondered about this symptom or that, if there was something deeply wrong with me or if I was just being crazy. My chronic illness spoke the same language that I knew all too well: Fear. My chronic illness made me disconnect from my body so that I no longer recognized myself. This state of lacking self-recognition became a kind of safe haven, a closet that kept the language of fear from yelling at me. In the closet, fear spoke to me in digestible whispers.  I continued with my daily life working and spending time with others, as if nothing was destroying me from the inside out. I became irritable and pushed others away because I felt that they no longer understood me.

Some days I can’t tell the difference between pain that I have because queerness has remapped my body versus pain that I have because chronic illness has remapped my body. I will never be the same. That doesn’t mean that I am broken, but it doesn’t mean that others should project onto me how they think I should be “fixed,” forced to see somehow that bodies are not panic-driven, that language without words is not fear. I’m tired of people telling me that queerness and my gluten-free-chronic-pain-coping life style is somehow unrelated. Please, please, if you are one of those people or know one of those people, tell them to stop harassing me by denying my existence. Ableism is a form of discrimination against people with disabilities, including people on the chronic pain and chronic illness spectrum. If someone tells you that their experience with ableism and homophobia intersect, don’t tell them that it’s impossible to draw connections. Do listen with an open heart.

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14 Dos and Don’ts of Healthy, Meaningful Relationships

1.

Don’t expect yourself to have the same experiences as others in order to relate to them. Do learn to hear other people’s painful experiences even if they don’t match your own.

2.

Don’t go on and on about your problems without clarifying whether you want me to just listen or whether you’re seeking to make changes and would like my input or advice. Do make it clear what expectations you have for our interaction.

3.

Don’t make allusions to having a secret and then not tell me what it is. If you don’t want to tell me a secret, then don’t suggest you have one (some exceptions may apply to trauma-related issues). Do tell me personal things about yourself if you feel up to the challenge.

4.

Don’t compare yourself to me, then get angry and not tell me what’s going on. Do speak openly of your insecurities and the ways you are trying to work on them.

5.

Don’t pretend to listen to me while thinking of how you can make yourself into a certain kind of person through our interactions. Do listen to me for me.

6.

Don’t compete for most traumatic or most interesting experience. Do realize that it matters how you feel when you tell something, whether you’re present in your own story, not how dramatic the events were.

7.

Don’t interrupt or interject too much. Do question a social style that depends entirely on inserting yourself into others’ stories/social space.

8.

Don’t create conflicts in order to have something to talk about. Do talk about things that are important to you or just be silly.

9.

Don’t be afraid of silence. Do cultivate meaningful silence.

10.

Don’t blame people for problems that are circumstantial. Do understand the full context when you can.

11.

Don’t quickly blame people when they try to talk with you about an issue that they have. Do listen with an open heart.

12.

Don’t blame other people just to deflect from your own undoings. Do be honest about your own imperfections.

13.

Don’t expect me to nurture you, especially if I haven’t been vulnerable with you lately. Do ask polite, open-ended questions.

14.

Don’t assume that you know what I’m thinking. Do ask me what I am thinking.

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