If you aren’t one of the one in four adults − or approximately 61.5 million Americans − who have a mental illness, chances are you know someone who does. But, supporting a loved one with a mental illness isn’t always easy, and it can sometimes be hard to know what to do. The Mighty asked our readers to tell us the best ways to be an ally for someone who has a mental illness. Knowing how to support them could mean so much more than you know.
1. “They say mental illness isn’t a casserole illness — no one brings over meals. A meal or card after a hospital stay would be nice.” — Lori Allen Bernstein
2. “Acknowledging I have a serious problem. Many people brush off depression because ‘everyone goes through that.’” — Sharon McKinney
3. “Understand that sometimes I need my space.” — Tia Maria
4. “Saying, ‘You are important, you are loved.’ Sometimes, with mental illness of any kind, it’s easy to forget.” —Sam Thayer
5. “My anxiety causes me to question my ability to be loved. Verbal reinforcement is a powerful tool.” — Murrin Elizabeth Brads
6. “Saying, ‘You are not a burden to me.’” — Hope Strickland Russell
7. “You can’t fix me. Let me have bad days.” — Dayna Walls-Cochran
8. “Saying, ‘I cannot claim to know how you are feeling, but I’d like to try to understand. Would you help me?’” — Christine Piltzecker
9. “Saying, ‘I love you.’ Often I feel unlovable.” — Jeni Johnson Brown
10. “Just accept what I say about my brain; your denial of my mental illness only affirms I won’t be accepted.” — Melanie Segal
11. “Understand it’s an illness. It’s like having diabetes or asthma.” — Melissa Cote
12.“Never, ever brush it off or tell us to get over it. That just reinforces what we already think — that we’re weak and incapable.” — Bekah Paskett
13. “You don’t have to ‘get it’ or ‘accept it’ to accept me. Compassionate acceptance is the best gift you can offer.” — Ross Adams
14. “My husband allows me to just be quiet.” — Amber Scott Guerrero
15. “Don’t use labels as slang.” — Susan Lampton
16. “Just a random text with uplifting and encouraging words is always nice. When they’re random, they always seem to come right when needed most.” — Chelsea Fleming
17. “Asking, ‘How can I help you?’” — Sharon McKinney
18. “Don’t offer miracle cures.” — Ingrid Senger-Perkins
16.“Listening in a completely non-judgmental manner.” — Christine Dahonick
20. “Asking, ‘How are you?’ and meaning it goes along way.” — Laurie Gardiner
21. “Hugs work wonders.” — Manda Ree
22. “Accept and love me as I am, not who I used to be or who I could become.” — Joyce Drush
23. “When life gets hard, just be there. Don’t run in the opposite direction.” — Lexie Nooyen
24. “Saying, ‘I hear you. I believe you. This is not your fault.’” — Amy Tenberge
25. “Understand my silence or distance is not lack of caring. I’m not trying to make your life difficult, I’m trying to survive.” — Nicole Ryan
26. “I already know my anxiety and depression don’t have any rhyme or reason, no need to remind me.” — Christine Brown
27. “Treat me like a human.” — Kate Murphy-Frank
What would you add? Tell us in the comments below.
I look to my left at the woman sitting next to me on the metro. I realize she’s asking about my tattoos. She looks at my left wrist. I told her my right one says “future,” and hold it out for her to see. We both glance back to my scarred left arm and its wrist that reads “past.” She looks up at me.
“How’s it going?”
These words from a stranger, so casual yet filled with care, resonate with me. I explain in so many words I’m almost a year clean since my last relapse.
“I wish I had more time to ask you questions.”
We stay in silence for 10 seconds that feel like hours. Hanging in the quiet noise of the metro are so many possible conversations. I realize this is an opportunity and feel an urgency to speak with her more. I ask if she knows someone who deals with the same thing. In the next moments, she tells me a close friend of hers has been hurting for a long time, and sometimes she feels as though her own pain is so much. She questions the depth of the hurt — whether it’s large or small. She hopes it is the latter. I hope for the same.
“It’s just hard to tell, you know?”
I do know.
I’m not an expert on pain and I’m not an expert on healing, but I do know this: Both are part of life. And not just the lives of those who fight an illness in their minds — this holds true for all people. There will be times your wounds are so deep you don’t think they’ll ever heal. They will. There will be times you’re so high off the ground, you feel like you’ll never fall. You will. Hard. Instead of letting this truth burden you, accept it. I know it’s hard to be OK with the fact that what goes up will come down and that the opposite is also true, but with this acceptance comes the ability to navigate those moments more easily and readily.
This truth often hurts me. It can make me fear happiness because it will eventually slip away. Do I even want to feel good if I’m just going to crash afterwards?
But I decided it’s better to let myself feel what I feel. I need to live in this moment, not in anticipation of the next. It’s difficult to fear your own feelings. It’s no way to live. Learning to accept your emotions, the good and the bad, is an essential part of life. Happiness is a fleeting feeling like any other — it comes and goes throughout time. Sometimes it stays for a while and makes a home in you. Sometimes sadness will do the same. It’s a part of the human condition and it’s something we can live with. We have to. There’s no ridding yourself of the pain and the hurt, but with that comes the hope and the healing.
The woman on the train maybe felt things more deeply than others. I feel too much, too. She opened a conversation most people avoid. She spoke to a stranger on the train about the things inside and, for a brief moment, created a small space of honesty on a packed car of people minding nothing but themselves. These moments are what make me think. This moment in particular reminded me these things are universal, pain is not exclusive to the ill and sometimes a small exchange of words can be just what we need.
Amy Bleuel, founder and president of The Semicolon Project, has adopted the semicolon to represent perseverance and hope for people who live with mental health issues. Bleuel, who is 29 and from Green Bay, Wisconsin, created the project in 2013.
The Semicolon Project is a faith-based nonprofit movement which aims to encourage, love and inspire people who live with mental health problems.
“In literature, an author uses a semicolon to not end a sentence but to continue on,” Bleuel told The Mighty. “We see it as you are the author and your life is the sentence. You’re choosing to keep going.”
Bleuel has lived with depression, anxiety and self-harming tendencies since she was 8 years old. After living through abuse and sexual assault as well as losing her father to suicide when she was 18 years old, Bleuel decided to share her story with the hope that it would help others overcome similar obstacles.
“I grew with the project,” Bleuel told The Mighty. “I grew by seeking the proper treatment and medication. I have close mentors and friends that I can seek out when I need counsel… But seeing people continue their stories because of my story, seeing how they overcome, it has allowed me to heal myself and further better myself.”
As part of the effort to raise awareness, the project encourages people to draw or tattoo semicolons on themselves as a reminder that their stories aren’t finished yet. Hundreds of people have been taking photos of themselves and sharing the message on social media.
“It’s humbling to know that a message you started is resonating with people and so many people are choosing to continue their story because of your efforts.” Bleuel told The Mighty. “I stand in awe of how big it is. It’s hard to grasp and fully take in because its such and amazing thing.”
Do you have a story about your experience with mental illness? We want to hear it. Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. More info here. Thanks!
Our son Cody began presenting signs something was “wrong” at a very young age. The first “red flag” went up when he was just 18 months old. By the time he was 2 we were becoming more and more concerned, but as new parents we assumed our “Terrible Twos” were just exceptionally terrible.
But the “Terrible Twos” turned into the “Horrible Threes” and the pre-school years were even worse.
Exhausted, we decided to enroll Cody in a pre-school program. As an only child, we thought interaction with other kids would be a good idea. We found a reputable program and signed Cody up. We were thrilled.
But almost immediately, I began receiving phone calls.
“Cody is in trouble.”
“Cody didn’t follow directions.”
“Cody was aggressive.”
“Cody wasn’t able to be still during story time.”
“Cody was written up again today.”
“Parents are complaining about Cody.”
“Cody can no longer attend our program.”
And so we tried another school.
And another after that.
We got kicked out of every one.
I was constantly being told was how difficult Cody was and that I had no control over my child.
But they couldn’t control him either.
I began to internalize the criticism and before long was convinced I was a terrible mom. All the other kids behaved. Why couldn’t I get it right?
My self-esteem was shot.
I can only imagine how Cody must have felt.
I knew Cody was a challenge. I lived with him. (Believe me, I knew!) But I needed respite and I needed help! If I couldn’t handle him and the professionals couldn’t handle him, what were we supposed to do?
Twelve years and multiple hospitalizations later, Cody is now 16 years old. He has a diagnosis of bipolar disorder and ADHD, he is oppositional and defiant and he has sensory processing issues. Cody is a sick kiddo, but he is also very smart, very mechanical, incredibly loving and kind. He is artistic and has a great sense of humor. We adore Cody.
And over the years, as we’ve navigated our nation’s failed mental health care system and worked with educators to help our son, I’ve learned some important lessons. Thankfully, I no longer hang my head in guilt and shame. In fact, I am proud to say I’ve learned to effectively advocate for my child. With the help of our school district, we have finally found some success.
Parents and teachers, this is for you. I want to encourage you. You all play a significant role in the lives of children affected by brain disorders. Your partnership is critical to the success of the child. Here are a few of the most valuable lessons I have learned.
1. Admit there’s a problem.
Parents, if you have a child with special needs of any kind, but especially if your child has a mental illness, the best thing you can do for your child is admit something is wrong. So many parents walk in such grief, guilt and shame that they refuse to admit there’s a problem. By walking in denial you are hurting yourself but more importantly, you are hurting your child. There is no shame in having a mental illness. If your child had cancer, you would do everything you could to help them. Mental illness is no different. Don’t let it be different. If your child has a brain disorder, love them, grieve for them and be honest about it. Help is hard to come by, butit isavailable. Admit there’s a problem and seek help.
2. Partner with your teachers and administrators.
Once you have determined and accepted there is a problem, your school administrators and teachers must become your best friends. Be kind to them. Encourage them. Talk openly with them about your child. Ask them how you can help them and ask for their advice. Work together. They are your team. You need them and they need you. Most importantly, your child needs you all. Work closely with your school.
3. Remember you know your child best.
As parents, we naturally want to put our trust in the “professionals” and the “experts.” We rely on them to know what is best for our children. But over the years I have discovered even the most well-intentioned professionals do not know my child as well as I do. Listen and heed their advice when it seems appropriate, but if something does not feel right or sound right, remember, you are an expert too! In fact, you are the expert when it comes to your child. Be kind and professional but speak up confidently. Don’t be afraid to voice your opinions and concerns.
4. Be patient.
Working with the education and mental health care systems is a process. Mental illness is not treated like any other illness in our nation and as a result our school districts have become responsible. This is wrong. But for now, it’s the system we have to work with. I sincerely believe in most cases, school districts really do try to do what is best for the child. However, they have a process they have to follow, which includes a lot of hoops and red tape to jump through. Follow up with them, but be patient. Work with them, not against them. Earn their trust and let the system do its job. In the end, they have a responsibility to provide a free and appropriate education for your child. Stay on top of them, but be patient and kind. If you work with them, they will work harder for you.
5. Say thank you.
Teaching is a thankless job. Teaching kids with special needs and mental illness takes thankless to a whole new level. Be sure to thank your teachers. Praise them when you see they’ve gone the extra mile, bring them a Starbucks to start their day and let them know you appreciate them. A simple “thank you” will go a long way.
1. Thank you.
Teachers and administrators, you are overworked and underpaid. Your job is thankless and I know you sometimes feel like a babysitting service instead of professional educators. Your classrooms are overcrowded, sometimes un-air-conditioned and at the end of the day you still have to go home and grade papers. You are important and valuable and while it may not always feel like it, you are appreciated. Thank you.
2. Join our team.
Teachers and administrators, we need you! Our children with mental illness learn differently than other kids and their illness makes things very difficult at home. Caring for our children will require a team approach. We need you to be on our team. Be gentle with us. In many cases we are living in 24/7 crisis. We are scared, ashamed and we feel alone. We may make your life difficult sometimes, but it is only because we want to help our children and the system does not make that easy. We need you, but more importantly our children need you. You play a vital role in our children’s success. Please join our team!
3. You make a difference, please know the difference.
Teachers and administrators, you’re on the front lines with our kids. Your help is critical when it comes to caring for our children with mental illness. Mental illness is real. Perhaps you know this, I hope you do, but I need to say it again anyway: Mental illness is real. It’s not just a behavioral problem or something the parents are doing wrong. It’s an actual medical condition that requires medication, just like heart disease or diabetes. I cannot begin to tell you how often I have been berated for bad parenting when my child actually has a diagnosable mental illness. Your willingness to understand and know the difference between behavioral problems and actual mental illness is critical to our families. Please help us help our children. Be aware and know the difference. If you don’t know, then talk with us or ask your superiors to provide additional training.
4. Listen to us.
We recognize you are the professionals and the ones with the degrees. We value your input and we trust you to help us help our children. But just as we respect you, we need you to respect us. We truly know our children better than anyone else. Our insights can be a huge help to you. Please listen and take our concerns seriously. Most parents are genuinely well-intentioned. Let’s work together!
5. Don’t give up on our kids.
The teachers who stand out are the ones who gave Cody a chance. Kids who have mental illnesses are difficult. Believe me, as parents we know! But our children with mental illness are important too. They deserve a chance. So even though your classroom is overcrowded and you’re tired from all the state testing, don’t be afraid to think outside the box to find ways for our children to participate. And most importantly, focus on the positives. Give our kids praise. Give us praise! Your kindness and encouragement will go a long, long way.
To parents and teachers:
Please be willing to admit some kids just need more help than parents can provide. This is nothing to be ashamed of. It’s not the fault of the parents, the child or the school. The child has an illness. Let’s treat it that way. Your willingness to work together and to encourage and support one another is crucial for every child’s success. When a child has a mental illness, there are no easy answers. But together, we can work better and smarter to ensure that every child has a chance.
Illnesses can take away so much of your privacy and make you feel a bit fragile. I’ve had several chronic illnesses since I was little, but no matter how old I get, there are still certain topics that are hard to discuss with others. Four of the biggest things I’ve found people don’t like to talk about are the effects illnesses can have on mental health, way of life, finances and relationships.
1. The Effect on Mental Health
A diagnosis is a new and life-changing experience, whether it’s acute or chronic. If it’s a chronic illness, it’s something you’ll deal with for the rest of your life. There may be several emotions that pop up, such as fear, shame, grief, possibly jealousy, depression and anxiety. It’s common, but it isn’t always a comfortable topic to bring up with your friends, significant other or even your doctor. But your feelings should never be ignored; they’re an important part of being sick, not something you should have to bottle up continuously or face alone.
At times, it can feel like you’re just trying to keep your head above the water while everyone around you is swimming just fine. Feeling hopeless, alone or depressed can be common, and with help from professionals, these feelings can be helped. It’s what you choose to do about it these feelings that counts.
You may not want to admit you’re struggling emotionally because then you’d be admitting it out loud and to yourself (which sometimes feels even scarier). But your mental health is no less important than your physical health. You wouldn’t be afraid to ask for help with physical symptoms like pain or nausea, and you shouldn’t be afraid to ask for help with any emotional symptoms.
2. How Your Way of Life Might Change
Chronic illnesses completely change the way you live, but there are many different resources that help you adapt. A shower chair to help with fatigue; a walker, cane or wheelchair can help you safely get around; grabbers make it so you don’t have to reach too high or too low to get something; can openers help open difficult jars; stair lifts help you go up and down the stairs; and many other inventions that can help you live more efficiently.
If it’s gotten to the point where it’s not safe for you to live alone or be by yourself, there are always assisted living facilities for people of all ages to live while still being independent. Safety is the most important thing.
3. The Expense of Illness
Illness is one of the most expensive things you will face. Of course, insurance helps, but they might not cover everything until you reach your out-of-pocket deductible. There might also be co-pays for each doctor visit, which really start to add up when you see eight doctors a week.
Even if insurance helps out, you may not be able to afford a medication you need. You may have to make a choice between the prescriptions that help keep you alive and whether you go to the grocery store that week. Missing out on that medication makes you sicker, creating more doctor’s appointments and more co-pays. It’s a vicious cycle.
4. The Impact on Relationships
Illness has a huge impact on relationships and can be one of the hardest things to deal with. The strain they can place on relationships between friends, family members and even significant others make you feel upset or alone.
Plans often have to be cancelled because you aren’t feeling well and going out to do something would make you much worse. This doesn’t mean that there’s something wrong with you or that you don’t want to do anything. It just means your body isn’t prepared for that right now and you have to reschedule.
Hospital stays are far too frequent. Having a best friend who understands this and doesn’t mind coming over to watch a movie with you or just ask if they can do anything to help is one of the best things you can have. The times you have to cancel because of an ER visit are when you need friends the most. Compassion doesn’t go unnoticed or unappreciated, trust me.
Illnesses change your life, but they don’t change your strength and bravery.
The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.
No, not right now. My daughter’s 2 and a half years old, silly people! Right now I want her to spout goofy things or get all serious like she did the other day when she said, “I love you, Daddy.” I’m not ready for her to go all Richard Pryor or Eddie Murphy or George Carlin on me, though come to think of it, it’d be pretty cool if Sienna started dissecting language the way the great Carlin did.
No, I just don’t want her to become like me, a person so scared of being judged that he’s unable to say the four-letter words that comfortably fill the public lexicon.
I’m not ready for Sienna to have her mom’s sailor mouth, but eventually, when she’s a teen, I don’t want her to be afraid of speaking the language of her classmates (yes, we’ll have the comedic swear jar). Once she reaches adulthood, I hope to be ready for her to speak such words in my presence as part of normal conversation because the reality is that cursing is ordinary and sometimes, often even, acts as a release for pent-up stress.
I wish I had that release, but I’m terrified of what people will think of me if I curse – fear of judgment, just another aspect of experiencing depression. I’ve been trying to figure out where this particular one comes from and I believe it’s from my father, who in turn got it from his mother. My grandmother doesn’t curse at all and doesn’t believe either of her children, their spouses, any of her grandchildren or their spouses use words like s–t or f–k… ever. She lives in a perpetual dreamworld, a life of denial, because as far as I know, just about all of them curse. My late grandfather, teller of bawdy jokes, probably cursed, though never in front of my grandmother. My dad? I assume he did when he was younger in front of friends and while in the National Guard. I know he does at work sometimes. I heard him once when I temped at his office. But he seems uncomfortable with it, like my grandmother’s directly in his brain.
My dad never cursed in front of me when I was growing up and seemed terribly uneasy when my mom did. And I think I took that discomfort and internalized it to the point where I can’t curse in front of anyone… not even my wife. I think I feel if I utter a f–king this or f–king that or call someone an a-hole, my dad will know and think less of me. To be honest, I imagine everyone will think less of me. And that’s ludicrous. Why would anyone care? But just like with my anxiety, it manifests physically, twisting my stomach, weighing on my chest, my veins feeling like they’ve been shot with cold radioactive dye. I even have trouble writing the words, as you can see by my incessant use of hyphens.
I tried to change when I went to college. I went in there thinking that I’d start cussing like Al Swearington on “Deadwood” (OK, “Deadwood” wasn’t on yet, but you get my meaning). I wanted to create a new identity. I wanted to be normal. So I tried. Freshman year I said something about my roommate to my best friend, something like my roommate’s “getting off” on being a jerk and my best friend’s eyes widened to the point where I thought they’d burst.
“You’ve never said anything like that before!” he shouted. I know he was proud, but I took it as criticism – and I didn’t even really use a swear word! And that was it for me in college. I couldn’t curse after that. Freshman year became a pathetic war with hallmates trying to get me to utter obscenities.
I’ll never forget Chad, a tall, lanky, long-haired blond fratboy who’d corner me daily.
“Say s–t,” he’d say, but I wouldn’t. “Come on. Just say it.”
And he’d laugh when I couldn’t because at that point he’d win. They’d all win. I’d be cursing for them, not for me. And the pressure in my head built.
When alone, profanity swirls through my head and expletives spout from my mouth. If driving alone, I’m not immune to deriding a bad driver with a “motherf–ker” or even give someone the middle finger. When I’m alone, vulgarity comes easy, but my jaws clamp in front of others. “Friggin’” I’ll say. “Morons. Jerks. Idiots.” For the longest time I wouldn’t even say “hell” or “damn.”
Eighteen years post-college and I’ve cried in front of my therapist about my inability to curse, tears streaming, face scrunched and reddened with embarrassment and anger.
“You’re safe here,” she’ll say, leaning toward me as I twist myself into a pretzel. “Let go. Say f–k.”
I sputter like Fonzie trying to admit he’s wrong. “Fu…fu…fu…fu.” But that’s as far as I’ll get.
“I’ll leave the room,” she’ll say. “I won’t hear it. Just say it.”
And she’ll leave, the door clicking. I’ll sit there furious with myself, face blotchy, hands tightened into fists. The room dulled and quiet. Sometimes I’ll whisper it, sometimes not. It doesn’t matter. No one’s there to hear me so I’ve still failed. “F–k” and “s–t” and so many others remain missing from my daily speech.
I have, however, added some over the years. For some reason I can now say “hell” and “damn” and even “bastard” and “son of a b*tch.” It took 30-plus years for me to say those words out loud in front of people. I’m not sure if I say them in front of my dad. I know I don’t say them in front of my grandmother. But I still feel so much internal pressure when it comes to swearing, like the world would stop, a collective gasp catching in everyone’s throats, fingers pointing, judging, always judging, if I dare utter the f-word in front of another person. And I don’t want that for Sienna. I never want that for her. The cycle that began with my grandmother, passed to my father and then to me seemingly by osmosis will end. I want my daughter to curse.
I look forward to having a swear jar and by the time Sienna’s old enough, I hope to be adding a few coins to it myself.
The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.