When Type 1 Diabetes is Too Much for a Child to Bear

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When Diabetes is too Hard for a Kid Handle

Three years ago, when he was eight, my son Finn* was diagnosed with Type 1 diabetes. It took us a solid year to adjust to the disease’s rigmarole, but with a fantastic school nurse, genius pediatric endocrinologist, loads of support from the diabetes online community, and enough real-life connections to keep us feeling safe, cared for, and connected, I thought we were doing fine. Frankly, I thought we were sort spectacular: make us into action figures and call us The Well-Adjusteds. But then one year ago, at ten, Finn lost interest in everything, even his life’s most-coveted things: a date at the trampoline park, meeting a friend’s puppy, a trip to the Lego store. He told me, I think I’ve lost my zest for life. 

A psychologist diagnosed Finn with depression and referred us to a psychiatrist for medication. And then our dog died. At the same time, Finn’s endocrinologist and a gastroenterologist diagnosed him with celiac disease. Lumped together, this was tremendous misfortune, a lot for anyone to deal with, and Finn was only ten. Under the care of the psychologist, psychiatrist, and gastroenterologist, Finn began taking Prozac and Vitamin D, and stopped eating gluten. Our family adopted a new dog. These changes put the spring back in his step immediately. Meanwhile, he continued seeing his psychologist at least twice a month and his psychiatrist once a month, and never lost his zest for more than a few hours at a time. The gluten free diet, Prozac, and Vitamin D seemed like the perfect solution. Unfortunately, it has not turned out to be a lasting one.

Now, one year later (Finn is eleven), I’ve learned – in the most chilling way – that the primary threat to Finn’s health isn’t Type 1 diabetes or celiac disease. It’s depression.

On a recent Thursday morning, I received a call from Finn’s school psychologist. She said I should come to her office right away.

When I arrived, Finn greeted me with a hug and then remained slumped against me. The psychologist explained that Finn had come into her office saying he was depressed and wanted to die. I thought she must have misunderstood. Why was he in the psychologist’s office? He should have gone to the nurse. I hadn’t even known the school had a psychologist. I thought he probably had low—or high!—blood sugar and just needed glucose—or a glass of water!—to restore him to his normal, cheerful self. Why, he’d left the house just a few hours ago, carrying a pumpkin under his arm, and chatting about the pumpkin painting party his class would be having, and was feeling hopeful: Maybe I’ll get my respiratory system poster back today! I think Mrs. Halpin really liked it!

The psychologist continued to report what Finn had told her as he leaned against me with his face buried against my shoulder. She had asked him, Are you thinking of hurting yourself? (He said yes.) How? (He reported that he wanted to bash his head in with a baseball bat.) How likely are you to do it, on a scale from zero/not really going to, to ten/absolutely certain? (He’d rated the likelihood a seven.)

I was floored. But I was not horrified, because I didn’t believe he could really be thinking any of those things. If he were, why would he turn to a stranger? This was too weird. Finn must have been pretending. Was there a math test he was trying to avoid? Has anyone checked his blood sugar to rule out a loopy hypo?

While I inched toward considering that any small part of what I was being told might be true, a guidance counselor took Finn into an adjacent office while the psychologist explained that she was on hold with the psychiatric hospital’s emergency assessment department, waiting to hear if they could see him immediately. I remember saying Wait. What? And then I cried. She handed me a tissue. I dried my eyes. I dried them carefully, like a heavily made-up pageant contestant, so I could pretend I hadn’t been crying when Finn came back into the room. When Finn was diagnosed with diabetes, I’d done the same routine: disbelief, sudden tears, brief hyperventilation, pageant eye-dab, competent adult mode.

From there, on the advice of the school psychologist, Finn’s psychologist, and Finn’s psychiatrist, we headed to the psychiatric hospital. I remember asking the school psychologist if we shouldn’t first go home for something to read, or my knitting, or to pack a snack. She said she would definitely not recommend that. Looking back, I can see it must have seemed pretty macabre to her that I was concerned with getting bored or peckish while my son’s suicide risk was being evaluated.

In the hospital admissions department, a social worker interviewed Finn and me. For me, it was love at first sight. She had great eyeglass frames, messy Katharine Hepburn hair, and pushed the sleeves of her striped sweater up over her elbows, revealing skinny arms and unapologetic age spots. She glowed with competence. Finn was comfortable with her too, and thoughtfully considered her questions.

Over the course of an hour or so, I learned how miserable Finn has been. He hates having diabetes. He doesn’t want to do it anymore. He hates having celiac disease. At school or at parties he can’t eat the same food as everyone else. He’s tired of being different. This information didn’t gush out, as if he were relieved someone had popped the cork on his bottled-up sadness. Instead, with each question, his posture became more and more deflated.

Further and further he slumped as he answered with shrugs, uh-huhs, and nods, until he had slid right off of his chair and curled into a ball on the floor. This ball eventually worked its way under a desk and pulled the neck of its shirt over its head and refused to answer more questions.

“Kid,” the social worker said, “you have had a tough run of luck. With the diabetes, and the celiac, and I know your dog died, and the depression…it’s worse for you now, and I know this doesn’t help, but you’ll be way ahead of the game when you’re an adult. You’ll be a crackerjack friend and problem solver.” I thought that was such a nice point for the social worker to make. Unfurled from his ball, Finn hugged his knees and stared at the floor.

Her next point was less nice: he’s suicidal.

I’m sure her analysis would have been a shock no matter what, but Finn has always been so sanguine about Type 1 diabetes and celiac. I’ve been waiting for the suckage to dawn on him. I think Udi’s is better than regular bread, he’ll say, or I’m glad I have diabetes because I still get to have a snack, even though there’s no snack time in middle school. Entering the hospital on October 30th, he told his dad and me It’s okay that I’ll miss Halloween. I’ve only been looking forward to it a little bit. These kinds of assertions strike me as outlandishly naïve; at the same time I can’t help but admire his aplomb.

After the interview, we were told Finn would be admitted to the hospital as soon as they could figure out how to manage his diabetes. Finn uses an insulin pump, and this caused a hubbub. After all, leaving a lethal dose of insulin in the pocket of a suicidal child is not an option. But what to do?

It soon became apparent that the nurse lining up Finn’s diabetes care was placing calls in an effort to locate a specialist who might know how to disconnect an insulin pump. I explained that it’s easy to remove, and that Finn takes it off to shower or swim, that it’s just a simple clip. The nurse said, “But who will remove the port?” I explained that we could just pull it out, that it wasn’t really a port—just a tiny needle. The nurse thought I should remove it right away, for safety. I thought we should wait until we were sure Lantus was available.

Next the nurse explained that, because of the strict calorie count the dietary department would provide for Finn’s diabetic meals, he wouldn’t need Lantus. I said I didn’t think we were talking about the same thing, and that Finn’s diabetes care didn’t involve calorie counts. With visible exertion of his patience muscles, the nurse paged the pediatrician on call and asked me to speak to her.

PEDIATRICIAN: What is it you think your son needs?

ME: He has Type 1 diabetes and uses an insulin pump. I understand why he can’t have it in the hospital, but I can’t disconnect it until I know he’ll have access to Lantus.

PEDIATRICIAN: Oh, is he very brittle?

ME: Brittle?

PEDIATRICIAN: Blood sugar goes up and down?

ME: He has Type 1 diabetes.

PEDIATRICIAN: In a hospital, all diabetic meals are very carefully controlled. The dietician will make sure he gets the right amount of food at each meal.

ME: I really don’t think that’s going to matter. He definitely needs basal insulin, and once we disconnect the pump and remove the site, there won’t be any.

PEDIATRICIAN: Why don’t you describe for me what it is you think he needs?

ME: Well, pretty much as soon as we disconnect, he’ll need Lantus to replace the basal insulin he won’t be getting from the pump. And then whenever he eats carbs or if he’s high, he’ll need Humalog.

PEDIATRICIAN: Oh, do you mean like a sliding scale?

A new layer of fear draped itself over me. Every trusted expert was in agreement: Finn needed to be in the psychiatric hospital. This hospital was the place he could be kept safe from anything he might use to try to kill himself, while having daily access to a psychiatrist and all kinds of intensive psychotherapy. This was his best chance to stop feeling suicidal as quickly as possible. But what if—in the most nauseatingly ironic twist that has ever crossed my mind—this hospital’s version of diabetes care killed him? I have been so used to seeing diabetes as the #1 threat to Finn’s health that it was hard to believe this could be a safe place for him.

After several conversations about diabetes management that went nowhere and confused everyone, Finn’s endocrinologist faxed over a plan. Lantus every night at bedtime. Humalog for carbs and for blood glucose over 200 mg/dL. Check blood sugar before each meal, at bedtime, at 2:00AM, and whenever Finn feels low. I was grateful that his endo stepped in, but wondered if her intentionally rudimentary orders would be enough to keep him not only safe, but also feeling well. Coming from the Dexcom House of Microtuned Insulin Pumping, it sounded to me like he’d be high all of the time, and wouldn’t that keep him from feeling better?

Now that Finn has had a few days on this regimen, I admit that the blunt tools of the endocrinologist’s orders are working as planned. His blood sugar has been kept high, but fairly steady, usually in the 150 – 250 mg/dL range. At home, I’d consider this a C- or D+. However, without a Dexcom revealing every post-meal spike, it seems more like a B. When I arrived for a visit on his third day, a nurse told me Finn was low, but she hadn’t given him juice because she knew I was about to arrive with lunch. At first I was worried, but all was well. By “low” she meant 138 mg/dL.

On the same hospital wing where Finn has been and will be for the next few (many?) days (weeks?) are about twenty other kids suffering from assorted psychiatric illnesses. Most of these appear to manifest themselves in screaming, kicking, refusing to move, or obesity.

On a publicly displayed chart, the kids’ first names, cryptic abbreviations for their psychiatric illnesses, and other medical issues are listed. A quick scan reveals that several kids share Finn’ psychiatric codes, but that Finn is the only patient with diabetes or celiac. For most of the kids, the OTHER column is blank. Exceptions: one child’s “other” issue is “brush out hair every other day.” Another’s is “shrimp allergy.” Pffft. That’s nothing! I think. Then I remember it’s not a contest. Then I remember if it were a contest, Finn would lose.

Emotionally, I’m still on autopilot. At the same time, the hospital gives me a visceral case of the willies. I can’t believe this is happening. Staff members wear forearm guards for protection from bites. Who are these children? Perhaps the most frightening one is a little girl with a big voice who, on the evening of Finn’s admission, hollered about baby lotion for four straight hours. (Baby lotion. Hello? I SAID I need my BABY lotion. BABY LOTION! Hel-lo. Lights on? Nobody home? I need my BAY. BE. LOW. SHIN.)

On arrival, I didn’t believe these children could seriously be Finn’s cohort. I asked a staff member if he could move to a quieter room, or at least a room not adjacent to the baby lotion girl. Gently, each time I tried to gain access to an elite, secret wing for politely depressed children, a staff member explained to me that there is no quiet section. That all of these children are suffering. That most of them act out, but some act in. Finn is acting in.

One of the few items he is allowed to keep in his room (no toys, no sheets, no shoelaces) is a file labeled My Therapy Folder. It is blue with a rainbow label. Inside are loose-leaf worksheets. Their titles make my stomach flip: What Makes Me Want to Hurt Myself. Things I Can Do Instead of Hurting Myself. What Happened to Me Right Before I Wanted to Hurt Myself. Every sheet is blank except for All About Me:

My favorite animal is narwhal. My favorite food is red velvet cake. My favorite tv show is none. Why are you here? Severe depression suicidal thoughts. If you could be anyone, who would you be? Myself. What are two things you would like to change about yourself? Nothing. What makes you sad? I am not sad I am happy.

 *The author’s name has been withheld and her son’s name has been changed to protect their privacy. 

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Comments (24)

  1. Karen at

    My heart breaks with the telling of this story. Type 1, celiac… It’s a lot for kids to handle. While it’s hard to read about (tissues definitely needed here!), it’s very encouraging, too. This mom has fortitude in embracing this difficulty and sharing their story! The psychiatric unit was not prepared for managing type 1 diabetes. At any point in this process — and especially when encountering their lack of knowledge — it would be tempting to take your child home. Many would have done so, with the ill conceived notion that everything will just work out. This mom persisted. As a former social worker and a mom of a teen with T1D, celiac, a life-threatening food allergy and more, I say Bravo! I hope this boy gets his groove back soon. With a team of caring professionals and an astute and loving mom, the odds are in his favor.

  2. Amanda at

    Thank you so much for your honesty and courageously sharing this with us. I am so sorry you and your family have to deal with this. I can’t imagine how hard it must be. My daughter who just turned 5, dx at 2, has yet to deal with these types of feelings. But I want to be prepared for when and if the day comes how to handle it. It’s brave parents like you who are willing to share it who will save lives by doing so. From Alabama I give you a big hug and lots of love.

  3. I want to reach across the internet and give you and Finn* all the hugs. I have bipolar disorder and have dealt with depression since I was close to your son’s age. Mental health issues, particularly depression and bipolar, run very deeply in my family and my 11 year old daughter has been in counseling since she was 6 so hopefully she has a better chance of escaping all of this, or at least knowing that there is help out there which is not something I had as a child. She was diagnosed with T1 in March 2013 and about 6 weeks after diagnosis (which she seemed to take in stride) she became very withdrawn and mildly depressed and it broke my heart. Your story breaks my heart because it brings to light one of my greatest fears for my child (and for myself). We are in the process of having psychological assessments done because her therapist is concerned that she may be depressed. I see bits and pieces of it, but she insists she is okay. Having suffered with this awful disorder for years that’s more frightening to me because it possibly means that she is keeping everything in until it becomes too big of a burden to carry and that is when things fall apart. I know this because I’ve lived it firsthand.

    I hope that things start looking better for your family. Don’t forget to take care of yourself too. See your own therapist, even if it’s just to hash out your feelings in the thick of things. Hanging on too tightly too often leads to losing grip on everything.

  4. Heather at

    Thank you for sharing your story. Please know you are not alone. My son has type 1 and a number of other health issues, and he has struggled with depression as well. Sometimes our love and support isn’t enough. It takes strength, courage and a ton of love to admit that and get the help for them that they need.
    The conversation with the doc about his diabetes gave me chills, as we have had similar conversations when my son was hospitalized for non-D issues. So frustrating and scary!
    Hang in there and know that we are thinking of you and your son.

  5. Tracy at

    Thanks for sharing. So few understand or even relate T1 and depression. We’ve been there…he had heart surgery, T1 dx, spinal staph infection that left him unable to walk for a week, DVT and now CRMO. Psychologists, psychiatrists, counseling, medication….Depression will be with him the rest of his life. Prayers for you, Mama and your sweet boy, love to your family!

  6. Laura H at

    I don’t even know how to respond. I’ve been staring at this comment box for 10 minutes. I am so scared, worried, sad and overwhelmed by this story that I feel guilty having those feelings and wonder if I feel this overwhelmed how must this mom feel?

    I’m thinking about you and your family (hardly adequate) but I am and I am hoping *Finn improves and that you and your family find what works for him and are able to find peace. If I knew you I would hug you and hug you so tight — possibly not let go. I am so sorry this s happening!

    Stay strong, be brave and fierce as only mommas can and know that the DOC is behind you and supporting you.

  7. I am crying inside right now (professionals don’t cry at the office) for “Finn” and for myself. I have an idea of what he’s going through. My grand-mother died a few months after I was diagnosed. I kept smiling and dealing with it and trying to be positive. But underneath it all I hated all the testing, and carb counting, etc. I didn’t want to hurt myself but I did get depressed.

    I hoep Finn gets the help he needs and return to full mental health.

  8. Petra Vester at

    Thank you for your honesty. My heart goes out to you and Finn. All I can send you is a virtual hug, I have no advice. Just know that we all are thinking of you. The part that makes me so mad is the lack of knowledge of other medical personal about t1d. I know they can’t know everything about everything but given that depression and type1 come as a package many times should be a sign to the medical community that this needs attention. A facility near my home will not let type1’s stay in because they don’t know how to handle “it”.

  9. Amy at

    Thank you for writing your son’s story. I cried through much of it because I felt like you were describing my 13-year-old. He is also type-1 diabetic, has depression, and anxiety (plus ADHD). He was just tested for celiac disease today, and we are waiting for results. He has been ill for weeks with GI issues. I read your story to him while sitting with him on couch. I wanted him to know that he is not alone with his feelings. You have given me the courage to go to a psychiatric hospital if the need arises. We have had a few close calls, and the thing that has stopped me is wondering how his diabetes would be cared for appropriately. Although it might not be the way I would care for him, it sounds like they could at least figure out how to provide safety for him while his emotional needs are met. Thank you again.

  10. This captures my heart strings..I wish I knew who this was to send him a “Team DiaBeat-it shirt” or keychain….When I got involved with the Tour de Cure– diabetes.org/tour, I got involved with the diabetes community.!!..NOW I participate in clinical trials and research so that kids will have great lives..(see artificial pancreas.org or visit MGH- Denise Faustian Lab).. ..There are a lot of KIDS ..teenagers who are diabetes “ambassadors”..who share their stories with sports, activities, friends etc..I’m on Facebook..Callie P Roberts and would love to share a t-shirt…check out You tube..”The Red Rider Program” with the American Diabetes Association..Mari Marie Ruddy has a few videos that talk about supportive stories of kids living with diabetes….

  11. A mom at

    Dear Mom,
    I’m hoping lots of parents get the chance to read this.
    I’m hoping you and Finn will be okay.
    I’m hoping you continue to write and let us know how you’re both doing.

  12. Stephanie at

    As a social worker and children’s therapist, I am thrilled to hear how you’ve been able to accept the reality of Finn’s present state and are doing everything you can to support him. And from the sounds of it, you are doing everything right. I wish all children could have a parent as caring, savvy, and determined as you are.

    And as someone who also has both Type 1 and celiac, I empathize with Finn. There’s no elegant way to say this, but this situation SUCKS. I also took (many) years to finally realize that I was angry with the hand I’d been dealt, and sometimes it feels like too much. But there will also be days in both of your futures where these diseases are just side notes to your lives, and not the focus. Finn’s ability to express his feelings so clearly, despite how scary they sound, will prove a strength for him.
    There are a lot of statistics about the high risks in store for those of us who have/had chronic illnesses as children and adolescents…But we are also an extremely tough, resilient, and preternaturally mature group. I wish the best of luck and support to both of you (and the rest of your family).

    Keep up your good work.

  13. Julie at

    Thanks for writing and posting this.

    As I think back about my own life with T1 and those of my friends with T1 depression is the most common thread.

    I think we all put on a brave face, deal with it, and move forward in life. All while fighting this never ending truth, it won’t ever end and it’s exhausting.

    Part of the problem for Type 1 as a whole is that diabetes is unlike any other chronic disease and is the only self managed disease where life and death is so finely balanced by the patient. We set out to try and perfectly match the physiology of the human body. Something that is so complex we don’t even fully understand it, yet we try to mimic it perfectly and then feel badly when we can’t.

    In any other setting, this absolute obsession and sought after perfection would be seen as a mental health disorder. Yet, because it masquerades as diabetes management, it’s seen as a healthy attitude towards diabetes.

    To be honest, I don’t think it really ever gets better. The way you feel can change from moment to moment. Burnout is a lifelong struggle but overall I have found the best medicine is to be around others with type 1. They are the ones that truly understand what each day is like and there is an internal, quiet comfort when you see a syringe, when you smell someones insulin, or hear the click of an others poker.

    I hope your son finds some peace.

  14. Anonymous at

    I feel so much better with our story published and your comments have made me feel so, so much better even beyond the initial feeling better. Thank you so much for your loving care.

    Finn is now living at home, attends school, has fun with friends, but there’s this constant awareness (for me at least) that when we ask him how he’s doing we mean a whole bunch of things more than happy/sad, hungry/tired, or whatever people mean when they ask how you’re doing.

    Thank you so much for your support. I feel completely buoyed by you.

  15. Shannon Armstrong at

    I am so sad to read the story I a have a similar one and feel that it is a hidden secret that needs to be told. I unfortuantly do not have the time at the moment to write our story. However it involves my daughter and a very similar story. My hear aches for both our families and our children. I would love to reach out to you. This is an important issue that needs to be discussed. My daughter also has celiac as well as type 1. She is 16. She also had to go to the hopsital actually against my wishes before I even made it to the school. There is so much left to be said. Prayers for you from a family who understands.

  16. Kate at

    My son was diagnosed with type 1 diabetes 12 years ago this month, he was just shy of his 5th birthday. He spent Christmas in the hospital, I asked the doctor if we could just wait until after the holiday to go to the hospital, he looked at me like I was beyond stupid and explained that we wouldn’t need the hospital if we waited, we’d be planning his funeral (his blood sugar was over 1000). He has battled depression since he was 10 and like Finn he’s a master at managing his diabetes when he’s feeling ok. He’s been on his pump since he was 7 and loves to teach anyone about it but there are times when he is just DONE being diabetic and wants to quit. He’s attempted suicide several times, all but the last time by overdosing on insulin (it’s amazing how fast you can pour fruit punch into a kid and drive to the hospital at the same time). We have had the exact same experience every time we’ve sought psychiatric care for him as you describe. It’s terrifying to balance two things that seem to be in conflict both of which can very quickly kill your child. We have often found that our son is not the only diabetic at the hospitals he’s been treat at which only makes the lack of knowledge about diabetes all the more confounding. At one point he was one of 4 kids with diabetes out of 16 kids being treated; that’s 25% of the clients and they still were clueless about diabetes management!

  17. Sarah at

    This broke my heart. Diabetes is so draining… it just seems to take, and take, and take sometimes. I hope you and Finn* find lighter days very soon.

  18. Angela at

    Thank you so much for sharing. Please let your son know that he is not alone!! That there are a whole lot of us with Type 1 diabetes who deal with depression also. That it comes with the territory and it’s ok to need help. After 32 years of living with both, I strongly believe a therapist should automatically be a part of the diabetes team. Also a diabetes support group or camp with children of similar age as this helps provide a setting where diabetes is “normal.” Wishing you all the best!! (And it is so very hard to lose a pet. Hugs)

  19. This broke my heart and I’ve been there before. I didn’t have the kind of system that you do, and I spent a lot of time suffering in silence – and when I talked, I was called selfish and told to snap out of it. I spent a couple weeks in the school psychologist’s office at the urging of my guidance counselor while I got called a liar by my parents. Bless you for your help and understanding. Now that I am older, I understand now that my mother was only scared half out of her mind and in denial, but that still doesn’t excuse her actions. Thank you for being understanding, believing, and working to get help. That alone is a big move in the right direction.

    I wish I could say that it gets easier, but it doesn’t. I’ve been a diabetic for over 18 years and have had some serious health diagnoses myself recently, and there are times even now when I just want to quit diabetes and all the other health problems I have. I didn’t have a pump until I was well into my 20s though, and since I find it way more freeing than the shots I spent 13 years taking, having that does help me out a little bit.

    I wish there was something I could say to make it better. I wish I could say that things will get better, that there will be a cure soon and we will be normal again. But the reality is there is no cure yet, and normal is only what you make it to be. The only thing I really can say at this point is: your son (and you) not alone.

  20. Kenny Wusstig at

    As a T-2 Diabetic this is the saddest story I’ve ever read. For me when I was diagnosed back in 2011 at age 20 I felt the same way. Sad, confused, angry and depressed. Especially since I couldn’t join the military. But in the future we diabetics just have to learn to live life one day at a time. And try to make the best of it no matter what.

  21. Craig at

    Such a heartbreaking story! But so glad you were able to catch things before tragedy struck. I can’t even imagine watching one of my kids go through all of that. Positive thoughts headed your way and I hope things get better.

  22. Anon at

    Thank you for sharing this story. I am 29 with Type 1 since I was 10. I cried reading this – I wish someone had recognized this in me at a young age. I am lucky to still be here. your son is so lucky to have you. Best of wishes.

  23. Anon at

    I’ve had a similar experience with my son – type 1, depression, suicidal. Been to crisis centers – none properly treat the diabetes. Last one I had to get the police involved to get him out of the crisis center and into a hospital because my son begged me on the phone that he was in agony, blood sugar was over 400 and was not being given insulin when needed – only on their “schedule”. Was hoping to find a link to a place that properly treats both illnesses

  24. CMP at

    It’s no wonder we’re depressed, even those who claim to “help” do not help, “professionals” know next to nothing, and those they work for will never release a cure. I have suffered for over thirty years with well controlled T1D. The advent and continuation of life by artificial means is sick and cruel, an unending marathon with no finish line. I would rather not have the option and pass away naturally. I would trade for any cancer any day, a disease which offers both support and an end after struggle. T1D’s do not have true support, we are misunderstood, demonized, victim blamed, and discriminated against when we are a group dealing, invisibly, with the worst day to day 365/24/7 struggle. PTSD needs to be discussed.

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