Thursday, April 11, 2013

Being Shamed for Speaking Publicly About Mental Illness

I received a comment on my blog the other day which brings up an issue that affects many of us with mental illness - being shamed for talking publicly about our illness.

Here is the comment: 

"Anonymous has left a new comment on your post "The Messy Reality of Mania":

Dear Katie,
This post of yours is a true cry for help if I ever heard one. This was a truly sad and disturbing post to read. This has been viewed by many of your relatives and it upset many. I know that it must have been very hard for you to write it. This is not only hurting you, but also your husband and, unfortunately your son as well. Please, for your sake and for the sake of your family, seek a competent psychiatrist who is very familiar with bipolar disorders. I know that you do not like to be medicated, but if you work with the right person, they can find the right drug that can help you. Please do this for yourself. You are the only person who can change you. There is hope, but you need to take the first step. We all love you and want only the best for you.

A very concerned relative" 

There are many issues with a comment and action such as the one above. First, let me say, this is an "anonymous comment from a very concerned relative." This is the internet friends, and I did not think to require an email to leave comments on my blog (that will change though), so I have no idea if this really is a family member or someone else. I do believe whoever this person is, they do care and want the best for me. That is very kind and I appreciate the concern.

Photo copyright of Seanan Holland.
However, this comment is written in a way that shames people with mental illness. Maybe not on purpose, but that is what is happening. They are asking me to wear a public mask in order to not make them uncomfortable. This is much like the mask project we did in seminary where we painted the outside of the mask to represent what we are supposed to present to the world and the inside with who we really are.

Saying that me telling my story and opening up about the reality of mental illness upset many of my family members and I am hurting my son and husband is extremely shaming. This comment is saying "I am scared of your illness and so I don't want to hear about it. I will use the ultimate way to make you feel bad, saying you are hurting your family, in order to try and get you to do what I want." Whenever someone says "many others agree with me" you should probably question that. This is a common way for someone to try and get you to do what they want by backing up their statement with an unseen group of people to make you think "If lots of people agree, I must do what this person is asking of me." In leadership you learn that these unknown "many people" often end up being just a few out of the hundreds in the organization.

There is also a huge assumption that this person knows what is best for me and how my husband and son feel. All inaccurate information of which they have not attempted to verify. It is a presumptuous comment which does not allow my husband or son to speak for themselves.

This comment assumes I do not have competent medical help. Sadly, whoever this is has not actually inquired as to what help I am getting, which is a lot. I am fortunate to have more people helping me than the average person with mental illness. I am so blessed to be getting such great mental health treatment.

Out of the dozens of comments and emails I received about the blog post, only two people thought it was a cry for help. This is most likely due to a misunderstanding of what a cry for help is and not knowing much about cutting, which is why I will write a separate blog post on this topic to go more in depth on those issues. 

This comment is annonymous. This happens to people with mental illness all the time. For me it was on the blog, for others it is triangulation where a "concerned friend" tries to get to get their message of concern to you through another person. Other times it is an anonymous letter or email. 

In ministry I learned to never take anonymous feedback. Anonymous feedback is a huge red flag that warns: this issue really has nothing to do with you and everything to do with the person attempting to bully or shame you into doing what they want. Anonymous feedback leaves no room for relationship, understanding, empathy, compassion, and love. And in all honesty, true concern and love does not come from an anonymous comment. It comes from direct communication.

I know the phrase "You are the only person who can change you" is very popular. I don't disagree completely. We can not change another person. For someone to recover from a mental illness, or really deal with any illness, they need to recognize they have an illness and be open to treatment. However, mental illness is greatly affected by environment. When someone is trying to treat their illness and they are in an unsupportive environment, it is almost impossible to get better. In fact, it is really just better to get out of the dysfunctional system. The best thing to compare this too is alcohol addiction. If the family of an addict drinks around them, keeps alcohol in the house, does not support their recovery, and will not talk to them about their addiction, they are sabotaging the alcoholic. 

I understand that mental illness scares people. Many illnesses scare us. No one wants to be sick. The reality of illness is that it is messy and complicated. That does not mean we should not talk about it. The more we hide it, the more we promote this whole idea that mentally ill people are too scary to be around and we just want them to get medicated and be quiet.

You may be wondering if you have a loved one you are worried about what might be a good response to express concern for someone. Here is one suggestion:

"Dear Katie,
This is (name of family member or friend.) I read your blog post and I did not know so much about your bipolar before. I admit it was sad for me to read this, but I am glad you shared so I can know more about what you are going through. Are there ways that we can help you and be supportive of you? Please let me know what we can do. Please let Jeff and Jeffrey know we are around if they need anything as well. We love you."

Notice that this does not bring up their evaluation of my treatment of my husband and son. It does not imply that telling my story is upsetting large groups of people and thus inappropriate. It is not anonymous so I can actually contact this person and ask for help if I need it and thank them for caring about me. It does not judge my choices on treatment or judge the actions of my medical professionals. It is honest that the reality of mental illness is scary for them, but they want to help anyway.

As a side note, let me address the issue of not agreeing with someone's form of treatment, because I know that is something many people are worried about. It's valid. Sometimes people do things you think are not a good idea. When I see someone with heart disease eating a burger and fries, I too want to say "Stop doing that and get help." That is shaming and unlikely to actually help them change their behavior.

Recently I had a friend express their concern who said, "I don't think bipolar can be controlled without medication, but I am willing to support you in your decision and help you any way I can. I am here if you need me and you can call me any time." This response expresses their concerns and opinion, but also does not try to change me. It lets me know they will help me. This means the conversation is always open and they respect me, which leads to me being able to hear any suggestions they might have. It is non-confrontational, not shaming, and relational. 

It is sad that mental illness is so scary that we have a hard time talking about it and accidentally communicate in ways that are shaming and do not allow for us to help each other. I understand why this happens. It is a tough subject to talk about. I hope by sharing the issues with this comment that I can help people communicate with each other better.  


Rev. Katie


  1. What a heavy thing to address. Good for you for doing so! But I'm glad you have real friends who, even if they don't think bipolar can be managed without meds, don't try to change you. I'm in that boat. And I must say that all the exercise, meditation, herbs, sun therapy, and more that I use have helped ward off major episodes, while helping me grow as a person and supporting my physical health as well, in a way that mood stabilizers, etc., never did. In the end, only YOU know what's best (and just because you have a mental illness doesn't mean you have poor judgment; sometimes I think it's quite the contrary)!

    1. Dear Ra,
      I am blessed to have supportive friends. I am glad to hear about the alternative methods you have used to manage your mental health. It is good to share our stories so we all know there are other options out there. I would love to know what types of sun therapy you have done. I have a sunlight lamp that I have used off and on but have not done a lot of research on sun therapy.
      Blessings to you on your journey!

  2. Great post, Katie. In so many contexts, anonymous feedback is hard to deal with and unhelpful. The person making the comment isn't accountable for what they said and a real dialogue can't take place. As someone who lived in a tight knit community with you for several years, I know how much care and energy you put into being a mom, wife, and taking care of yourself. And I know that you have worked tirelessly to find an excellent therapist to work together with you to find the best treatment possible.

    Much love to you and your family. And love to the person who made the anonymous comment. I hope that she/he can find a way to have a loving, helpful dialogue with you.

    1. Dear Elaine,
      I too hope that whoever this person is can find a way to have a dialogue in order to help them feel more comfortable and cared for. That is why anonymous comments are so hard, there is no way to make a relationship better.

      Thank you for your support and for helping on my path to caring for my family and myself. My friends have been so helpful at reminding me to take the time to be healthy.

  3. Speaking as the wife and sister of people with mental illness, I know first hand that secrecy about the condition and presentation of normalcy for the sake of the child, spouse or person dealing with illness can hurt more than the illness. If family members must presenting a "normal" appearance despite the evidence that there is a problem, this can be more difficult and painful.
    Thank you for your brave honesty in helping people understand mental illness. I hope you receive more compassion and understanding for yourself and others than condemnation. I know you seek to find what works best for you and no specialist can provide the "right" solution.

    1. Dear Sharon,
      Thank you for your perspective. I do not think people understand how detrimental the secrecy is. I hope that as a person who has a public job, that if I do not give in to the secrecy due to fear of being shamed or because of other people's discomfort, that other people with mental illness will be able to share and not remain secret anymore as well.
      Thank you for your wisdom and compassion.

  4. As someone with mental illness, your blog, your work, your relations with your family, are so inspiring to me. You gave me hope that one day I can raise my children to be understanding and I don't have to hide my mental illness from them. Or from anyone for that matter. By speaking out, you give others with mental illness the courage to do the same. You are such an inspiration to me in so many ways, I am so blessed to know you. You do so much good for so many people, and I am so inspired by how you handle things. Thank you for all you do, you give me hope and courage time and time again. Much love.

    1. Dear Katrina,
      I hope Sharon's comment above also shows that to remain secret in a family is more detrimental than the illness. You will be able to raise children and be open with them and have a wonderful relationship with them. Just like you have a great relationship with Jeffrey. I am blessed to know you as well and see such a wonderful person working to manage their illness and have a great life at the same time. You show other people that this is possible as well. Hugs to you!

  5. Rev. Katie dear heart,

    I want to thank you for helping me to see this form of "shaming". There are many ways that individuals and society seek to shame people into certain modes of behavior, often modes that are more about making others more comfortable and not about living lives of openness and wholeness.

    You and I have talked on many occasions (Rev. Katie and I went to seminary together) about how the commitments of ministry call us to live a public life. We are called to bear witness, often through our own lived experience... and at times that can make our families uncomfortable. For our partners and often our children, they gain some experience of this though seminary and living ministry with us. We set our boundaries of what is appropriate in part through our communication with this close family. I know that you have had these conversations with Jeff and Jeffrey (the coolest kid in the world) about this aspect of living the public life of ministry.

    That being said, we sometimes run into the discomfort of some of our extended family members, when it comes to our being public about the trials and tribulations of our lives as a part of our modeling and pastoral ministry. In the comment left by an anonymous "family" member I saw not only the kind of societal shaming that occurs, but also how families sometimes object to a minister living their commitments to a public life.

    I simply want to say that it is a profound work of ministry that you do, in your public writings about living with mental illness. You have touched many lives, and I know you have been touched by those many lives. If the cost of this public ministry is some discomfort among some extended family members, than I would suggest it is a small and necessary price to pay.

    Yours in faith and friendship,

    Rev. David Pyle

    1. Dear Rev. David,
      My compassionate and honest friend and colleague. As you know, your wisdom is always appreciated and always comes at the right moment. I think that as public figures through our ministry, us bearing witness to our own struggle is so helpful to people. It is a risk, but a risk that helps many and so I find it worth it.

      You and I have talked about how ministers presenting themselves as perfect or in an unrealistic light can be unhelpful to those we minister to. It encourages people to hold themselves to a standard that is unattainable and only causes them pain for wondering why they can't keep it all together like they see a public figure doing. When in reality, we are all human and all imperfect and all struggling. I want to help people through their struggles, not seem like I have some perfection that other people do not.

      As I research more and more about the power of vulnerability, I see pastoral ministry in a different and more powerful light. Vulnerability gives hope to many, discomfort to some. If people are willing to talk about that discomfort and walk into it, they learn much about themselves and can heal in ways they may not have ever knows were possible.

      For some reason, this reminds me of the quote from Dune, "I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain."

      Discomfort is fear and if we can not face that fear, we will never see the path from which it came and discover more about ourselves.

      I am grateful a good friend shared that book with me in seminary. (I recommend everyone read it.)

      Blessings to you Dear Wise Friend,
      Rev. Katie

  6. Katie,
    "Inherent worth and dignity of ALL people". You have walked this, live it daily and have dedicated yourself to helping those around your learn to deal with the "imperfections" of being human. From knowing you, and being a part of your faith community, I am continually in awe of how your honesty about your struggles has a long term positive effect on Jeff and Jefferey and those who surround you. Where it is true, that you don't always, "get what you give" my hope is that you continue to see the light and love from comments like those above and don't let the negativity drain your wonderful honesty and spirit.
    Your blessings to my daughter (and me) are immeasurable and I will always be grateful.
    Love and strength to you on this journey!