To the Little Girl Just Diagnosed With PANDAS and CVID

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Dear 9-year-old me,

I know you’re scared. “PANDAS” sounds pretty funny, but how you’ve been feeling is pretty scary. I know you have a lot of questions. I’ll try to answer a few of them.

What does PANDAS mean?

I promise you aren’t turning into a bear. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus, a subclass of PANS (Pediatric Acute-onset Neuropsychiatric syndrome). When you get sick, your body gets really confused and thinks your brain is what’s making you sick so it attacks it. Which is why your brain has felt so weird lately. It’s had a battle declared against it!

Will I always feel like this?

Because PANDAS is triggered by strep throat infections, you’ll feel a lot better when you aren’t sick. I don’t know for sure if your brain will ever be completely back to how it was. I wish I knew, but I’m still in this battle too, seven years later. Now, little girl, you’re almost 17. But I promise it won’t always feel this scary. You’ll get used to it. You’ll figure out ways to fight it. There’s quite a strong fighter inside of you, little girl. You’ll figure this out. Your symptoms will go up and down, some days will be harder than others; sometimes you’ll have a lot of OCD but sleep fine at night, sometimes your OCD will be manageable but you’ll have tics non-stop. I’m not going to lie to you. This isn’t easy. But I know you can do it.

What will my friends think?

These next few years will teach you a lot about true friendship. The people you call friends right now might not stick around, but that’s OK. Better friendships will grow over time. You won’t be alone. (For more on what you’ll learn about friendship, go here.)

Does anyone understand?

Yes. PANDAS is estimated to affect 1 in 200 kids, and you will end up meeting more kids with PANDAS. A lot of them actually. Some you’ll only talk to online, some you’ll meet in person. You’ll even meet some other pretty cool sick chicks (shoutout to the original sick chick) without PANDAS. You’ll even be able to help some of them out when they’re feeling like you are — overwhelmed, scared, confused, hopeless, lost — but don’t worry about them right now. You’re overwhelmed enough as it is.

My doctor said I also have CVID. What does that mean and what does that have to do with PANDAS?

CVID is Common Variable Immune Deficiency. It means you get sick a lot, as you already know, and it can take a while before you feel better. So it might be a bumpy road with a lot of PANDAS flares that seem to last a really long time. You might have to get different treatments than other kids who have PANDAS because of your CVID, or you might have to get the same thing more often.

Will I ever be a normal girl again?

Oh, Pinocchio, normal is so overrated. You probably won’t ever classify yourself as a “normal” girl again, but give it some time and you might not want to anymore. After all, why be normal when you can be so much better than normal? You can be fabulous.

For now, try not to worry too much. Figure out how to work with this new brain you have. Figure out how to cope with depression and mood swings and how to challenge OCD. I know it feels really big, bad and scary now, but I promise a lot of good things are going to happen that couldn’t have happened without this. You’ll be OK. I believe in you.

With love,
16 year-old you

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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 Submit a Story page for more about our submission guidelines.
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To Anyone Who Knows, Loves, Teaches and/or Meets a Child With PANDAS

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Dear Mama/Friend/Family Member/Complete Stranger,

I see you staring at me as my 4-year-old is lying on the floor screaming at the top of her lungs that she has to have those cookies or she’ll die. I can almost hear your thoughts churning in your head, of how spoiled she is or that all she needs is some good discipline. When you saw us walking down the road to the restaurant, when it was 35 degrees out, me in my warm socks and boots, and her in her Crocs with no socks, I know you were tempted to say something. In fact, you may have even let a comment or two slip out about it’s too cold to be wearing summer shoes. I get it. I really do, and in the past I too would have those same thoughts if I saw a child screaming in a restaurant or repeating inappropriate words over and over. But now, since being blessed with my daughter and her unique set of challenges, I find myself saying a silent prayer for the frazzled parent I see standing next to their child, who’s hurling canned goods across the aisle. Because now I know: they’re just trying to hold it together enough to make it to the car. Now a days, I wonder what that child is going through or dealing with, and… could they too, have PANDAS?

You see, about six months ago, my sweet, spunky, well behaved 4-year-old started misbehaving. At first I thought it was me. You can’t imagine all the doubts and fears that have gone through my mind over the past few months. If we know each other, I may have even shared some of those doubts with you, but sometimes the responses and well meaning advice were just too much for me, so I found myself retreating back into hermit mode. I know you really do mean well. Whether you’re a close friend, a complete stranger or even a family member, I know you only desire the best for my child. But the thing of it is there’s no one on this planet who loves her more than I do, and her well being is my number one priority, even over my own health and happiness.

While you may have great advice that works wonders for other kids, it may not work with mine. You may think my child just has behavior issues, or is only being a “normal” kid for her age, or just needs a few good spankings… but you should know her issues aren’t just psychological. Her behavior and physical symptoms are due to an autoimmune disease that started from strep throat and is causing her own antibodies to attack her brain cells. Punishing her when she’s raging is like punishing a cancer patient for being in pain. Her behavior is a direct symptom of her disease; it’s not due to puberty, anger, defiance, poor choices, or any of the other numerous things PANDAS kids get misdiagnosed as having or being.

Author's daughter with PANDAS smiling and looking at camera.

When she repeats the word “poopy” over and over for an hour straight, it’s because  those antibodies are in overdrive, which can happen from something even minor like having a cold.

As parents, we all have our own struggles and trials, so while I know you too may be dealing with your own battles, right now, this is our journey and some days, it’s all I can to to keep us above water. I truly hate being self-centered, but some days I have to be just to survive.

Every day is different for us, and things can go from great to horrible in a minute flat. Please understand that while I need and crave your friendship, I may have to cancel plans… a lot. If we’re friends, please don’t give up on me. Please continue to reach out to me. I know you get frustrated when I never call or answer my phone, but it can be exhausting trying to carry on a conversation while trying to prevent a meltdown. While I want nothing more than to have a conversation that doesn’t include gibberish or statements more bizarre than anything you’ve probably ever heard – including from those who wouldn’t pass a sobriety test even if they cheated — sometimes it’s all I can manage with a quick text between my child’s crying fits. Just know your encouraging words are what helps me keep going.

If our children are in school, or church, or child care together, please, oh please, keep your child home when they’re sick because my child suffers dearly when she gets sick. Even better, let me know if your child gets sick, so I can be prepared for what may come.

If our children are friends, please help me nurture their friendship. I know my child may act different at your kid’s birthday party. I know how annoying it is when my child refuses to eat your food because it’s the wrong temperature or has sauce on it. You may be afraid my child’s “bad” behavior may rub off on yours, but instead, try using their friendship as a wonderful teaching opportunity. Explain to your child that their friend has a disease that sometimes makes them say or do strange and even scary things completely out of their control. Explain to them that they can’t catch it, and be sure point out all of the great things about their friend. Know that because of their friendship, your child will learn to have compassion for others and acceptance for those different than themselves.

I know you’re only trying to help when you approach me about buying your special oil/drink/vitamin/mix, and while I’m happy to hear about all the success stories, and cures it’s yielded, just keep in mind, I’ve already done more research than most doctors have on PANDAS and have probably already read pages and pages of studies about your oil/drink/mix/vitamin. Each child with PANDAS is unique, so what works well for one may not work at all for another. Understand that I’ve spent countless hours consulting specialists, making phone calls, taking my child to doctor appointments and getting feedback from other PANDAS parents, and while you may disagree with the treatment plan our child is on, you can bet it’s the very best one for my child at this time.

I know you’re just trying to be positive by saying my child is perfect for you in school/church/your house, but as glad as I am to hear that, it can also make me feel like a complete failure when my child gets home and dissolves in a screaming fit from overstimulation and exhaustion. Don’t let that stop you, though, from telling me about my angelic kiddo! Just remember you’re only seeing a brief snapshot of our lives, and the amount of energy it takes for my child to hold it together during school/sports/etc. is like us running a marathon after having run one the day before. When my child comes home to the safety of her family and familiar environment, it’s usually when she feels comfortable  enough to release her finger from the proverbial dam of anxiety, tics and obsessive compulsive behavior she’s been struggling to keep inside every second she was with you.

I know when you tell me there’s nothing wrong with my child, that she’s just a little hyperactive, you’re only trying to ease my fears, but again, unless you live with me, you’re only seeing a small snippet of our daily lives. I know you can’t understand what we’re dealing with, and honestly I’m OK with that. But just keep in mind,  if you do happen to see her during one of her rages, it probably isn’t because she’s had too much sugar, or not enough protein, or has a suppressed bad childhood memory, been abused, or even has an anger issue. It’s most likely her disease flaring, which could mean she has another infection or something has changed in her schedule, which causes her sweet little OCD mind to completely melt down.

If you’re a stranger, I would rather hear your questions than see your stares. If you’re a friend, I would rather have a listening ear than words of advice, and if you’re family, I would take encouragement over judgment any day.

Know that my main objective in writing this isn’t to cause anyone guilt or shame at all because I know my daughter will be OK no matter how others treat her. However, I would hate for anyone to miss out on the blessings, wisdom and sheer appreciation for the little things in life sure to come from knowing a PANDAS kid, and their family.

Sincerely,

A PANDAS parent

For more info on PANS/PANDAS, check out these sites:

http://mykidisnotcrazy.com

http://pandasnetwork.org

http://www.strepmonster.com

http://www.nimh.nih.gov/health/publications/pandas/index.shtml

Editor’s note: This post has been updated since publication to meet our editorial guidelines.

Follow this journey on The Wondering Widow.

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6 Ways to Be Helpful During My Panic Attacks

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Anyone who’s had a full-blown panic attack knows what a truly terrifying experience it can be. That sense of impending doom? I’ve felt it. The best way I can describe it is that it feels like I’m going to die. It’s not rational, but even when I know it’s not rational it doesn’t help. The symptoms are too overpowering. I’ve literally felt stress coursing through my veins – increasing my heart rate, making me sweat and creating a nauseating pit in the bottom of my stomach.

But while going through a panic attack is horrible, watching someone you care about in the throes of one can make you feel totally helpless.

Here are some things I know help me:

1. Ask me if you can sit and ride it out with me.

Not everyone will want someone to witness their vulnerability, but personally I find it’s comforting when a friend or family member stays with me. For me, being alone when I feel like I’m going to die only makes the fear worse. Knowing someone’s there helps me regain the power anxiety robs from me.

2. Ask me what I’m experiencing — then ask if there’s anything you can do to help. 

When I internalize all my anxious energy, it can potentially make my panic attack worse. If I can identify what’s triggered the attack, it can help. Then, once I’m talking, ask me what I need — maybe I need my medication or even glass of water. Helping me go through breathing techniques can also make a huge difference.

3. Validate that my experience is real.

One of the most frustrating things is when people minimize the experience of a panic attack. Telling someone to “just calm down” is one of the most counterproductive things a person can say. Some things you can say that may be more helpful include: “You’re doing a great job,” “I’m here for you,” and “We’ll get through this together.”

4. Add humor to the situation if possible.

They say laughter is the best medicine, and that’s true for me. Even when I’m extremely upset, a well-timed joke can add just enough levity to help calm me down. This may not work for everyone, but it can be helpful when used appropriately. Obviously I don’t want you to make fun of my panic attack. Remaining sensitive while being humorous is key.

5. Distract me with personal stories, creature comforts and/or favorite activities.

Distraction can turn my attention away from anxious thoughts. The more personalized that distraction is, the more likely it is to help. If you can, talk about a special experience we’ve shared, turn on my favorite music or TV show or get me something you know comforts me. Different people have different “comfort items,” like pets, stuffed animals, heated blankets or tea.

6. If you’re helping me, keep yourself calm.

The only thing worse than one person panicking is two. I can feed off your energy, so the calmer you can remain, the easier it’ll be for me to calm myself.

Panic attacks can be scary for both the person experiencing them and their loved ones, but knowing how to appropriately comfort a person who’s panicking can make a big difference. Your willingness to be there shows that person they’re not alone — and that can help the world feel a little less frightening.

The Mighty is asking the following: What’s one thing people might not know about your experience with a mental illness, and what would you say to teach them? 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.

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The One Question I Needed to Be Asked as a Black Woman With Bipolar Disorder

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I believe being black with a mental illness is one of the hardest things to accept in the black community. Why? Because having a mental illness only means you’re crazy. That’s it. In my experience, there’s no room for understanding. There’s no acceptance. You’re classified as crazy and then you’re forgotten. How do I know? Because I have bipolar disorder, and for 11 years I refused to get help because I didn’t want my family and my peers to think I was crazy.

I had accomplished a lot when I was diagnosed. I was a college graduate, wife, mother of two small children, business owner and so much more. So I hid the fact that in 2004, I was told I had bipolar disorder. I was ashamed, embarrassed and angry that mental illness was threatening to tear apart my world. No one asked me if I was OK when I disappeared for months at a time and isolated myself from things. No one questioned when I’d go days without eating or sleeping. No one asked about why I would get aggressive or about any other of my erratic behaviors.

All I wanted was for someone to ask me how I was really doing. Do I need help with something? Am I OK? Anything. No one did. Instead, they just thought, “Oh, that’s how she is.” That label stuck with me as I ruined relationships, employment and business opportunities and other great blessings. I plowed through life like a bull in a china shop. But while I was losing my battle to be mentally stable, it seemed like no one cared. It’s as if black people didn’t have mental issues. We’re either crazy, cursed or no good.

Imagine that.

No one bothered to ask me the right questions. No one considered that I might need help. No one asked, “You’re acting out. Do you need to go see a psychologist or a mental health counselor?”

That’s the one question I wish someone had asked me. That question would have changed the course of my life. That question would have made me take a real look at my behavior, and could have driven me to get the help I so desperately needed. Instead, it wasn’t until my primary doctor noticed something in me didn’t seem right that I finally saw a mental health counselor. And even then, after I received my diagnosis, I refused to get treatment because when I told my husband and mother, they rejected the idea.

They didn’t know how much I needed to be asked, “What can we do to help you?” “Where can you get help?” “What does it mean to be bipolar?”

Those questions could have helped establish my support system. But I fought alone, trying to determine what was real and what my mind was twisting up. I experienced so much devastation because I was alone.

But I don’t blame them. I blame stigma. I blame societal ideations that I believe say only white people have mental illness. I blame the lack of education and the health disparities that still plague minority communities. These are the things that keep us from asking the questions to get help.

I finally started to get help in April of this year. I got tired of losing a battle with stigma. Now, I’m on the road to recovery. Now, I want others to know they can get the help they need. Now, I’m transparent and share my story because I suffered for so long in silence and denial.

Now, it’s my time to lead others into the light to make their tomorrow a better place to be.

To hear more of Ivy’s story, watch the video below: 

The Mighty is asking the following: What’s a question you wish you were asked as someone living with a mental illness? How would you answer that question if someone did? 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.

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45 People With Depression Who Aren't Just Sulking in a Corner

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What do people with depression look like?

Feeling blue
exhibit A
girl sits in depression on floor near the wall
exhibit B

According to Google images, stock photo sites and even some antidepressant commercials, people with depression spend all day sitting in dark rooms and sulking in corners. And while yes, depressive symptoms sometimes manifest in this way (hey, there’s nothing wrong with occasional corner sulking), this doesn’t represent the 14.8 million adults in the U.S. who experience major depression disorder within a given year.

So we asked our Mighty readers who live with depression to show us pictures of them, well… living with depression.

Here are some of the real faces of depression:

1.

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photo via Marlena Davis

2.

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photo via Andrea Valiante

“Fighting the fight for my loved ones!” — Andrea Valiante

3.

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photo via Joe Scianna

“I won’t let the women be the only ones brave enough to post their pictures in answer to this question. I have dealt with debilitating depression for a number of years, and although some days are difficult, I still manage to care for my wife and children.” — Joe Scianna

4.

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photo via Julianne Leow

5.

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photo via Christine Suhan

6.

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photo via Barbara Audacity Johnson

7.

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photo via Carolynn Zalesak

“Gotta keep looking on. The beach is my favorite place to calm myself and bring a sense of solidarity into my life. Watching the waves roll in and out, boats go by, seeing the sunset…” — Carolynn Zalesak

8.

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photo via Meghan Croslis

9.

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photo via Kerry Ann Belford

10.

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photo via Amanda Talma

“I’ll entitle this one: depression atop a mountain.” —  Amanda Talma

11.

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photo via Lauren Landry Funderburk

“My husband suffers from depression and anxiety and still stands strong and faces the world every day. He is my rock, and an amazing father and husband.” — Lauren Landry Funderburk

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photo via Dee J. Davidson

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photo via Bridget Paris

14.

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photo via Jen Sprague

“This is me battling more than depression. I also have anxiety, PTSD and a solid fear of heights.” — Jen Sprague

15.

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photo via Leah Larsen

“Severe postpartum depression/panic disorder which required hospitalization. Have been battling major depressive and panic disorder since then. Had to go to an urgent psych center this Sunday for severe panic and relapsed depression. Today I faked it til I made it for a job interview.” — Leah Larsen

16.

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photo via Nichol Flemister

“Depression, anxiety, PTSD, insomnia. New hair cut. Life is beautiful.” — Nichol Flemister

17.

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photo via Megan Ann Themm

“Depression and anxiety. My husband took this picture of me when we were on a date not too long ago.” — Megan Ann Themm

18.

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photo via Brian Broadus

19.

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photo via Tia Borkowski

“Depression, anxiety and PTSD. I am the face of mental illness and I still smile. It is possible for both.” — Tia Borkowski

20.

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photo via Amy May Moss

“Depression for me and anxiety for the boy. We still climb mountains.” — Amy May Moss

21.

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photo via Kayla Wientzek

“I have battled (and continue to battle) severe depression, generalized anxiety disorder and social anxiety disorder since early childhood. I am in my early 20s now. Would you know it by looking at my picture?” — Kayla Wientzek

22.

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photo via Ashley Lawrence

23.

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photo via Francis Strait

24.

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photo via Katelyn Marie-Elizabeth

“The two of us battle together.” — Katelyn Marie-Elizabeth

25.

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photo via Maggie Justfan Downes

26.

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photo via Amanda Wright

27.

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photo via Laurie Newman

28.

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photo via Austin Lawrence

29.

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photo via Kirsten Marie Young

“Some of us have to keep going no matter what. And we have to cherish small moments like this.” — Kirsten Marie Young

30.

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photo via Allison Thompson

31.

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photo via Lori Plyler

“I live with depression and social anxiety. But nothing would stand in my way between me and that turkey leg at the Renaissance Festival!” — Lori Plyler

32.

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photo via Kristin Lynn

“I’ve lived with depression for 20 years. I consider myself a survivor. A fighter. I have been close to giving up but I am still here. This is me at a NAMI walk supporting a cause close to my heart and so many others.” — Kristin Lynn

33.

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photo via April Charisse

“Me on vacation. I love life! Have dealt with depression since I was a child.” — April Charisse

34.

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photo via Candice Diaz

“Anxiety disorder and depression sufferer. But I still try to keep a smile on my face. I will not let my mental health define who I am.” — Candice Diaz

35.

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photo via Kevin Walker

36.

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photo via Kristy Hindman-Cook

37.

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photo via Shannon Catledge

38.

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photo via Jessica Whisler

Bipolar, depression and OCD. All of us are born fighters.” — Jessica Whisler

39.

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photo via Paddy Ryan

40.

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photo via Cherice Marie

“Depression sucks. Chickens help.” — Cherice Marie

41.

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photo via Amber Kelly

Major depressive disorder and anxiety. I go to work every day and love and care for my patients. I smile, I laugh and I crack jokes and act goofy. I go home and love my partner and my cat. Some days there are less jokes and smiles and more nervousness and listlessness, but that’s OK because tomorrow is always new! My depression teaches me empathy and compassion — it makes me a better nurse. It’s hard, but it makes me a better person.” — Amber Kelly

42.

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photo via Nadia Melly Yanez

“Depression, anxiety and caregiver fatigue. And my son has severe autism and is non-verbal. But we keep going every single day.” —  Nadia Melly Yanez

43.

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photo via Olivia James

44.

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photo via Kim Morand

“I have these crappy things called bipolar disorder, anxiety disorder, PTSD and chronic pain, but they don’t define who I am — a wife, a former nurse, a writer and a mom to an amazing kid. My life is beautiful despite what my illnesses tell me and I’m so thankful I have people who love me and remind me every day I’m worth the fight. So are you. Please don’t forget that.” —  Kim Morand

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Woman Uses Powerful Photo to Send Message to Teens Who Self-Harm

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Editor’s note: This piece includes graphic imagery that some may find upsetting.

Jordan Supple posted a photo on Facebook on Nov. 10 showing scars on her arm from years of self-harm. The 24-year-old had an equally powerful message to go along with the image.

“Warning for teenagers/young adults. Look at this photo; this is my arm, for the rest of my life,” Supple wrote. She went on to detail how her cutting had an impact on both her and her loved ones’ lives.

“So teenagers, please…if you are sitting there alone contemplating putting that razor to your body remember that these cuts will last a lifetime but the pain doesn’t,” she added in her Facebook post. “Talk to mum and dad, they might understand more than you think, find a cool teacher at school and have a chat. You’re never ever alone.”

Warning for teenagers/young adults.Look at this photo; this is my arm, for the rest of my life.When I go to the…

Posted by Jordan Supple on Tuesday, November 10, 2015

Supple, from from New South Wales, Australia, told UK website Metro.com she’s since received hundreds of messages from people dealing with similar struggles. Her post has gotten more than 20,000 likes and 13,000 shares.

Supple became depressed around the age of 13, and after being hospitalized and working out a treatment plan that included medication and therapy, she finally learned how to handle stress. “My life now is good,” she told Metro. “I have a supportive family and friends. I feel positive about life and there is always hope for better and greater things.”

Oh hey! ?

Posted by Jordan Supple on Friday, June 19, 2015

“I wrote the post because I felt like teenagers needed some hope,” Supple concluded. “They have so many pressures these days and no one is speaking out about the issue. I wanted to give hope to those out there suffering and I really think I’ve achieved that.”

Read Supple’s message in its entirety below:

Warning for teenagers/young adults.

Look at this photo; this is my arm, for the rest of my life.
When I go to the register at the shops the check-out lady stares, meeting new people they see it, my potential new boss questions, my 4 year old niece asks why my arm is weird… walking through life now as a happy 24 year old I just wish I could tell my 13 year old self holding that razor that things do and WILL get better.

My mother shed tears as I was found bleeding on the bathroom floor, my mother watched as the doctors stitched my arms so many times… my families heart would break when I wouldn’t take a jumper off on a 40 degree day because I couldn’t show my arms.

I know being a teenager is hard, school sucks, parents are lame and it feels like no one understands but there are people that do understand and life has so much to give you.

So teenagers, please…if you are sitting there alone contemplating putting that razor to your body remember that these cuts will last a lifetime but the pain doesn’t. Talk to mum and dad, they might understand more than you think, find a cool teacher at school and have a chat.

You’re never ever alone.
Please share & like to get the message out there.

 

If you or someone you know needs help, see our suicide prevention resources.

If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

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