I am a nerd. I watch lots of sci-fi and fantasy, I write, I love to read and I play Dungeons & Dragons (D&D). I also have depression. Something I wanted to explore, though, is how D&D itself — as well as the D&D community — contributes to my recovery from depression.
My depression comes in waves. I’ll be fine for a few weeks, then one small thing sets me off and I’m in a depressive episode for days. Usually, I can still (mostly) function. I get out of bed and I carry on with my life, all the while feeling a weight on my soul. Sometimes, I can’t function. I lie in bed and stare at my phone absently, let myself go hungry and wait for something to compel me to leave my bed; usually, it’s because I have lain in bed for five hours and need to pee.
D&D, however, has managed to keep me grounded. For those unfamiliar, D&D is a roleplaying game where you are placed into a fantasy world and the success or failure of your every choice is determined by dice rolls. There are rules that you have to follow (at your Dungeon Master’s discretion) and, at least for the game to be fun for those involved, you have to immerse yourself in the world and let your character take over.
Ironically, inhabiting these different characters and focusing on their problems for a few hours instead of my own has allowed me to gain perspective on my own. Comparatively, not knowing what I’m doing with my life is a much smaller problem than killing the wrong god and unleashing gibbering mouthers onto an unsuspecting island.
More seriously, when I’m playing D&D, I’m surrounded by like-minded individuals who are looking for their own kind of escape. We become different people and are allowed to be silly, outrageous and dark. Every fight is based on teamwork and communication. The relationships we build with one another and with the NPCs are genuine. As one problem is solved, another one crops up — but we (usually) level up and are granted a sense of accomplishment.
Out of character, too, we engage with one another. One of my groups is constantly talking, sharing memes, sharing art of our characters, character playlists, and enabling each other to buy more unneeded but very pretty dice. We are there for each other. Early in the year, I got into a serious episode of depression and this group pulled me out of it. They had me watch “Repo! The Genetic Opera” and the next day, we all hung out and watched “The Devil’s Carnival” together. I wasn’t hungry all day, but by the time I got home, I felt so much better and was finally able to eat. Feeling that sense of community out of our game was exactly what I had needed, and they definitely delivered.
As for my characters, each of them is going through their own issues that I have to work through, which in a way gives me practice to work through my own real-world issues, which are smaller in comparison but no less deserving of my attention.
One of my characters is an ex-slave assassin running away from her organization because of the power of friendship, but she’s traumatized every other session. She often goes into her own depression, and the other characters have helped pull her out, just like they did with me. Another character killed her own mother as part of her backstory, but in the first game, she was killed. Now she’s a ghost who has to reconcile her mistakes and is doing her best to be worthy of a non-player character (NPC) love interest. She’s not perfect, but she’s trying to be better in her own way.
I also see how D&D has helped those around me. One of my best friends had disappeared on us for a few years, but now he’s back and seeking out friendship through our D&D group. One of my Dungeon Masters has leaned on the group for support as he went through a rough breakup. We’ve gone through job losses together, depression, dating troubles and so much more, but being able to immerse ourselves in a different world has helped us cope and lean on one another.
Each storyline has taught me something, and my friends have shown me support and love, both in and out of the game. Without D&D as an outlet for my emotions, I don’t know where I’d be right now. Chances are, I’d be in the exact same spot but feeling a sore lack of community.
This past Christmas, when my uncle asked me if I’d like to go on a trip with him to Vietnam in March, my knee-jerk reaction to an invitation on a mostly paid-for trip overseas was, “Absolutely I do.”
When March rolled around and I was in crowded, bustling, loud Ho Chi Minh City and Hanoi, I didn’t feel like I was allowed to feel anything but grateful — grateful for the opportunity to take off work, grateful to my uncle who generously offered the trip, and grateful for the ability to travel at all. So, on my fourth day there, in the thick of it, when I was fatigued from the jet lag, the heat and the general stress of being in a foreign place, I felt terrible for saying, “I’m going to stay home this afternoon,” while my uncle went for a walk around the city by himself. Instead of being out with him, getting lost in the Old Quarter of Hanoi, I lay alone in bed at our Airbnb, watching episodes of “Bob’s Burgers” on my phone.
Initially, making that decision racked me with guilt. I was only on vacation, in a beautiful, interesting country, for a week. There were dishes to eat! Sights to see! People to meet! Things to learn! My uncle specifically brought me with him because he didn’t want to travel alone. But, there I was, in the dark, watching the cartoons I’d watched at home a thousand times.
After a little rest and time alone, I realized how much I needed time to myself. I’d been around people nonstop for four days. Metropolitan Vietnam was a huge culture shock and as tiring as it was amazing. My senses felt completely overloaded. Plus, my uncle’s stress was rubbing off on me.
Time spent doing something familiar, with the lights dimmed and the noise of the city blocked out, made me feel more like myself. Taking a step back from the constant go-go-go of the trip helped my headspace immensely. I felt less anxious and less overstimulated the next time I went out. Also, I didn’t really feel like I missed much of anything by relaxing for a few hours. I still went out for dinner that night. I had two more days to walk around the Old Quarter with my uncle, and in those days, I think I saw most of the same things he did, save for a market, which was loud, close-quartered and probably would have triggered my anxiety or hypervigilance.
I’m glad I took time off as a mini mid-trip reset. I realized I was allowed to feel grateful and fatigued. I was allowed to feel stressed and captivated. I was allowed to experience the trip fully and take some time to myself. Actually, taking time for self-care allowed me to experience the trip fully.
On future trips, I may schedule time for myself to spend alone, doing familiar things. I will try not to feel bad if I need to step away and into myself. In order to experience a place completely, I need to be in a healthy state of mind. While I may not be able to achieve total health in the quiet moments, the quiet moments definitely help move me in the right direction.
“I wish I could be sick instead of you.” This is what my 7-year-old daughter said to me seven months after the fateful day I slammed my head into an icy mountain. Since the words “traumatic brain injury” (TBI) became part of our family vernacular, I have sought information from research articles, books, docuseries, podcasts, doctors and other healing practitioners on how best to heal my brain. But until recently, it did not occur to me that I should learn about how best to help my child cope with my invisible illness, despite the fact she had been struggling with it from the beginning.
When you are thrown into the overwhelming world of brain injury, it’s hard to remember the important things that need your attention. In the early stages of my injury, my daughter’s footsteps on our hard wood floors sounded and felt like she was stomping directly on my delicate brain. I recall with shame the time I literally squirted her with a water bottle to make her stop throwing a loud temper tantrum at the foot of my bed. For months, I dreaded the moment she came home from school because it was so overwhelming to process her incessant chatter, constant twirling and desire to be close to my face where my eyes would not focus. I was so engrossed in my own pain and suffering that I was unable to recognize hers.
In the early months, she cried often. She suddenly did not want to go to school; she did not want to leave my side. She got sick often. She made “get well” cards and wrote letters to me about my concussion during school hours. Around the six-month post-concussion mark when our whole family felt devastated that I had not yet returned to “normal,” she really fell apart. Before bed, she was often inconsolable. My sweet, easygoing 7-year-old became like a moody, angry and explosive teenager overnight. Little things set her off. She said things like, “I wish I had a different life, one where my mom does not have a brain injury,” and she screamed, “All you can do is sleep, eat and rest!”
That is when my husband and I finally switched gears and started focusing on helping our daughter cope with my brain injury. Each of us started counseling with individual therapists. We began the arduous process of accepting that I have a chronic illness, that our lives and family dynamics have changed, and that we are in it together for the long haul. Parenting is challenging work, and parenting with a chronic illness is exponentially more difficult.
If you (or a loved one) are dealing with a brain injury or other chronic illness, here are 13 ways you can help your child cope:
1. Take the time to sit down with your child and explain your illness in a way they can understand.
We have told our daughter, “Mom’s brain is bruised, and it is going to take a long time to heal.” We have explained what might happen when I have a bad symptom day and discussed the different ways that I am helping myself get better. Allow your child to openly ask questions about your injury. Assure your child that he/she is not the cause of your illness. If it’s appropriate, reassure your child that you are not dying from your brain injury. I was driving my daughter one day when she asked me if I was going to die. I had no idea this worry had been weighing on her.
2. Read age-appropriate books together about parent illness.
We have several parent illness books in our library that we read together to help our daughter process her difficult feelings and understand she is not alone in her struggle. There is a wonderful book by Melinda Malott called “How Many Marbles Do YOU Have? Helping Children Understand the Limitations of Those With Chronic Fatigue Syndrome and Fibromyalgia.” It provides a marble-in-the-jar analogy that is easy for kids to comprehend. I have crossed out the words “chronic fatigue syndrome” and “fibromyalgia” and replaced them with “brain injury” to help my daughter understand how my brain gets tired and overwhelmed and why I need to rest often.
3. Give your child extra TLC as often as you can.
He/she needs to feel secure and connected to you during a very confusing and scary time. When you have a brain injury, it’s likely you are unable to do the same things with your child that you used to do. Figure out what you are capable of giving to your kid and make that a priority. It could be a few minutes of close snuggling every night before bed, extra hugs throughout the day, a quiet activity together after school or a short walk in the woods. Be present with your child in those moments. I am no longer able to read chapter books to my daughter, something we used to love. Instead, we practice drawing, give each other home facials and massages and spend extra time snuggling before bed to connect. She also created a “love box” that we pass back and forth with special tokens like love notes, sweet treats and gems.
4. Allocate your sparse energy where it really counts with your child.
You have far fewer “brain bucks,” as my neurologist says, than you did pre-brain injury. Be smart about how you spend those precious brain bucks. If there’s a school event coming up that is important to your child, be sure to get extra rest and quiet time to build up your energy bank before the event. Bring your sunglasses and ear plugs, and make sure your child knows ahead of time that you may only last a few minutes. Plan for recovery time after the event. Try not to overdo it and go bankrupt. I went to my daughter’s breakdancing show and spent three days in bed afterwards. Although it makes us sad, I no longer attend her dance shows. Instead, my husband takes videos for me to watch at home.
5. Help your child identify their difficult feelings.
Be sure to validate those feelings. You can say things like, “you seem frustrated today,” “you must be so angry about Mom’s brain injury,” “it seems like you are feeling sad,” and “do you ever feel like it’s so unfair that Dad has a brain injury?” Find constructive and non-destructive ways your child can vent their emotions. We purchased a kickboxing bag that my daughter likes to punch and kick whenever she is feeling angry and frustrated. We also downloaded a great meditation and mindfulness app called Stop, Breathe and Think Kids.
6. Be authentic with your child about what you are feeling.
Kids are very perceptive and can tell when your words do not match your nonverbal cues. It may be very confusing to your child if you are not feeling well but you say, “I am fine!” Be honest and tell your child that you are sad you can’t make it to her recital or that you are frustrated your recovery is taking so long — whatever feels real to you. Verbalizing your feelings also helps them improve their own emotional vocabulary. However, don’t make it a habit to constantly complain to your child or share too much scary information. My child does not need to know I am worried I will never feel normal again!
7. Show your child you can be strong and resilient even in the face of adversity.
It can be very unsettling to a child when it appears that their parent is no longer sitting in the driver’s seat. Let your child know you are still there to protect him/her even though your brain is healing from an injury. Communicate the ways in which you are overcoming your illness and share your little victories with your child. My daughter knows vision therapy is dreadful and unpleasant for me, but I do my exercises every day because they are helping me get better.
8. Help your child accept that there is a new version of you.
My daughter and I were looking at a photo album together when she pointed to a picture of me and said, “There’s the old version of you. Now there’s a new version.” Isn’t it amazing how insightful our children can be? Post-brain injury, I am “Mom 2.0.” While we each miss certain aspects of Mom 1.0, we can’t change the fact that she is gone. So instead of dwelling on the life we used to envision, we are working on embracing a new family dynamic.
We are learning to be flexible and adapt to new circumstances. We discuss ways we have changed for the better and what we’ve learned in the past year. Now that I am no longer my previous “highly functional” self, we all agree that it’s more enjoyable to conduct life at a slower pace, to have more quiet time with fewer to-do’s and events on the family calendar. As Mom 2.0, I am more in tune with what is truly important to me (e.g. spending quality time with my child rather than keeping a spotless house), and I deeply appreciate little things I used to take for granted (e.g. being able to walk the dogs and take my daughter to school).
9. Practice gratitude every day.
Humans often tend to focus on the negative, and it takes a concerted effort to notice what is going well, especially with a brain injury. Like her mother, my daughter is a bit of a “Chicken Little.” It’s hard for her to appreciate that Mom gets up every day and devotes brain energy to making her breakfast when she is focused on the fact that Mom spends a significant amount of time resting in bed, unable to handle normal levels of sound and light. So we are both working on cultivating more gratitude in our daily lives. We’ve made a habit of naming three things we each are grateful for every night over dinner and one act of kindness we witnessed that day. Help your child see how many blessings you still have despite your brain injury.
10. Keep a journal together.
Journaling is a great way to help your child (and you) process difficult emotions, vent and see obstacles in a new light. It can also be a new way to bond with each other. My daughter and I started a concussion journal in a fancy new notebook. Together, we have made lists of fun things we can do while I am recovering, what she misses most about Mom 1.0, how she is feeling in the moment, things we are grateful for, and things we would like to do the following day. When she is feeling particularly sad, we encourage her to sit down with her thoughts and journal.
11. Allow your child to enjoy activities away from your brain injury.
Make sure your life is not all gloom and doom for your child. Find ways for them to still have fun and do the activities they used to enjoy. You might schedule or allow for some extra time at a friend’s house or have someone take your child on a special trip to a local amusement park. Try to incorporate a little fun into each day. I am no longer able to listen to music in the car, so we invented a game where the first person to see a specific animal earns points.
12. Consider taking your child to see a psychotherapist.
Your family is going through a hard time and may need some professional help. My daughter sees a psychotherapist once a week. Not only does she really look forward to those Thursday sessions, but she is noticeably more calm and able to articulate her feelings. The other day when I told her I felt sad that I couldn’t go to a party with her, she responded, “Oh well, sometimes these things happen in life.”
13. Practice self-compassion and let go of guilt.
By no means should you spend every waking second attending to your child’s needs. You need adequate time to rest, recover, reflect and reset. Pre-brain injury, I was already a harsh judge of my parenting skills, and post-brain injury, I feel terribly guilty that I am the cause of so much angst at home. But the self-criticism and guilt are not serving me or my family (it certainly doesn’t make me a better parent!) and I have to remember it’s not my fault I have a brain injury. According to Dr. Kristin Neff, author of “The Mindful Self-Compassion Workbook,” self-compassion means you are kind and understanding when confronted with personal failings instead of mercilessly judging and criticizing yourself for your inadequacies. I’ve found Dr. Neff’s guided meditations and exercises for self-compassion very helpful. Give yourself (and your brain) a break, honor wherever you are in your recovery, and practice saying, “I did my best today!”
Due to my group of friends with cerebral palsy, I am aware of how relatively mild my CP is; however, there is still an astonishing list of things I “struggle” to do. I find it funny, because though this list of simple things strikes my non-disabled friends as the end of the world, it is such a part of my everyday life that all can say is “C’est la vie!” It’s a French phrase meaning “That’s life.” We use it in English too, of course, but the literal nature it bears in French is worth noting. I am largely incapable of zipping a coat, tying shoes, putting a ponytail in or cutting meat.
The irony of all this is, on top of teaching French, I am a preschool para. Which means I spend two hours every day tying shoes, zipping coats and fixing ponytails for 3 to 5 year olds. Technically I can do all these things, but with such effort and time that it is not worth it for my personal shoes, coats and ponytails. But I do the best I can for the kiddos I am there to help. I have had my co-teachers come up to me and say, “I’ll do that, Madame.” The one I remember is zipping a preschooler’s coat. I can help with coats, hats, gloves and mittens, but not zippers. I was trying to zip, a co-worker watched me struggle with it and stepped in and said, “I can’t watch you do that anymore.” Or they will say, “That’s a two-handed shoe, Madame,” and trade tasks with me.
For my own personal life outside of school, I do not wear tie shoes and I do not zip my coat. Living in Minnesota, this might seem ridiculous, but a good parka with snaps and scarf does just as well. I rarely eat meat that isn’t ground. And I only wear ponytails on special occasions when I have extra time, and even then, they’re crooked.
I find it endlessly funny when people say, “Really, you can’t…?” No, really, I can’t and it really is fine. I remember dining with my in-laws for the first time. I was cutting my meat, clumsily. My mother-in-law offered to do it for me. I declined, and tried to explain to her that it really is fine and a normal part of my life. My inner thoughts about this were more like: I am a 24-year-old woman. I am capable of feeding myself.
The things I can do far outweigh the things I cannot; for that I am very grateful.
A while ago I wrote an article about facing imposter syndrome because of my illnesses. The gist of the essay was that it is difficult having a chronic illness and it often comes with a lot of insecurity and doubt. For me, these thoughts were intensified by a health care provider who belittled me into feeling like I was the problem, not my illnesses. She criticized my behavior and shot down my concerns. When I discussed the events of that appointment with my psychologist, his first piece of advice was to end any and all interactions with that particular healthcare professional. As a follow-up to that, here are more tidbits for dealing with imposter syndrome and illness.
It’s worth repeating again: don’t trust your health to people who won’t take it seriously.
Pick your provider carefully.
Access to healthcare can be difficult enough without the frustration of having to deal with a provider who doesn’t listen to you. My best advice is to head it off at the pass. Instead of going in for a visit without knowing who you are seeing, cherry pick who you want to see ahead of time. Ask your friends and family who they see. Use online tools like patient review websites to research your options. Read health forums or use the board certification registry to see who practices what type of medicine in your area. Call your insurance company to ask who your in-network options are. As the saying goes, the best defense is a good offense.
When I was searching for a new specialist for my IC/endometriosis, I looked up the best women’s health surgeons in my area, cold-called their office and asked to speak with a nurse. I asked the nurse who she would recommend given my conditions. She gave me her honest opinion and I now have the absolute best doctor. Be bold and resourceful in seeking out who manages your healthcare.
When I talked to my psychologist about my feelings of imposter syndrome, he mentioned that comparison is often the root of insecurity. We compare ourselves to other people and conclude we are either more or less deserving of our label. But sickness isn’t an episode of Fashion Police where we should sit and discuss “who wore it better.” Each case is unique and nuanced. Each person is given a different set of circumstances to work with. It can be so tempting to reach for validation or an excuse by comparing our case with someone else’s, but that is a slippery slope that only leads to more negativity.
When we think of ourselves as more deserving of something, we lose empathy for others. When we think of ourselves as less deserving of something, we lose empathy for ourselves. Either way, nobody wins. Focus on your own situation and your own treatment plan without putting someone else’s experience into your equation.
Accept that there is no benchmark of “normal.”
When I struggle with wondering if I am overreacting or making a bigger deal out of something than necessary, I want a solid answer. I like to know for sure where I stand as far as my pain/emotions/reactions. If I am being whiny, I want to know. If I am being irrational, I want to know. But how am I supposed to know? How can I tell if I am overreacting unless I know what the correct reaction should be? How am I supposed to rate my pain when I don’t know what an acceptable amount of pain is? How am I supposed to “buck up” or “calm down” if I don’t know what up or down looks like? What is OK? What is not OK? Someone just tell me what is normal!
But normal is just another word for standard, and standards are typically based on averages. Averages are calculated by comparing a bunch of things to one another and assigning them a relative value. And there is the catch-22: we can’t know what is normal without comparison, and as we’ve established, comparison is often counterproductive.
Instead of reaching for a collective definition of normal, I focus on my own normal. Instead of asking, “Is this normal?” say, “This is/isn’t normal for me.” My only measure for my pain/emotions/symptoms is my own experience.
Play “What is more likely?”
The encounter that provoked my imposter syndrome was inexplicable. I still can’t wrap my mind around why a provider with all my charts, labs and notes, would think she could swoop in and tell me my physical body is fine, it’s my mental health that needs more attention. My psychologist talked me through an easy little exercise to help me deal with the residual doubt: put true situations in objective language and decide what statement is more logical, also known as ‘What is more likely?’
What is more likely, that my three other specialists are right in my diagnosis and treatment, or that this provider knows better than all of them combined? What is more likely, my tumor was fake and a big conspiracy, or that this provider was being insensitive? What is more likely, that my pain is real, or that this provider is misinformed? What is more likely, that I am a big fraud, or that she was having a bad day?
Playing my own personal version of Occam’s razor helps me ground my emotions, rebuild my confidence and let go of the nonsense.
Acknowledge that providers are human.
I have two friends who are physicians and three who are mid-level providers. All of them care deeply about their patients and want what is best for each one. Recently, I was with one of these friends while she was on-call. She received a message from radiology that a patient’s scans came in over the weekend. I don’t know specifics (HIPAA is real, people) but whatever it was, it was really bad. My friend stepped away from our social gathering to make the phone call none of us ever wants to receive.
Later that night, her pager went off again. This time it was a basic question from a patient about a run-of-the-mill medical issue. My friend, still upset from her previous situation, stepped away again to handle the call but was noticeably less engaging. In fact, her demeanor was so perfunctory it bordered on rude. It wasn’t that she was mad at the person calling or didn’t care, but she just had to do a terribly awful thing and was mentally drained and incredibly sad. Those emotions seeped into her next interaction.
Working in medicine is hard. Day in and day out providers see people who are suffering and they may or may not be able to help. Even the most emotionally detached people have cases that get to them, and they react in a very human way. The nurse practitioner that fostered my doubt and insecurity should’ve been more professional, that’s for sure, but I should also be a little more gracious. I don’t know what situation she just stepped out of when she stepped into my exam room. I don’t need to subject myself to her “care” again, but I choose to forgive her and give her room to be human.
When I wrote the first article, I was still in the throes of navigating how to be OK with being chronically ill. I let the doubt, fear and anxiety of a bad medical appointment provoke me into wondering what was real and what wasn’t. With the help of my psychologist, I have a better handle on managing my imposter syndrome and my health, and I have learned to let it go.
There’s an aspect of living with a chronic illness like Ehlers-Danlos Syndrome (EDS) people rarely mention — intimacy. For those of you with a weak constitution or who are easily offended, now would be the time to stop reading as this piece might be TMI.
My husband and I have been together a long time, a lifetime. He is my confidante, my companion and my one true love. And he is also hot! Like most other young couples when they first get together, we were ridiculously head over heels in lust. With pure raw intense passion, we’d swing from the chandeliers and fool around at every given opportunity. We couldn’t get enough! It was a tremendously important part of our relationship.
As the years rolled on, the moans and groans of ecstasy turned to moans and groans of discomfort and at times, screams of horrific agony. (Granted, they sound incredibly alike, so one can see where there might be confusion.) There were nights when our bedroom might have been the set of a sitcom. He’d be thinking he’d really nailed that g-spot thing, the “ooohs” and “ahhhhs” gradually increasing in volume to become full-on screams. The louder I got, the harder he would go at it, thinking I was loving it. I had absolutely no opportunity to let the poor guy know my hip had just popped out! After incidents like that, he became petrified that he would break me. The mood killer was his unceasing questioning if I was OK or comfortable.
Before my diagnosis, I just assumed sex was difficult for everyone. Don’t get me wrong, I absolutely enjoyed that particular pastime with my man, of course I did! There was nothing like those moments with his arms wrapped around me and making me feel like I was the only woman on this earth. To know I was everything he wanted. But there came a point when the overwhelming pain and exhaustion from having a chronic condition far outweighs the pleasures of intimacy.
I simply didn’t want sex anymore. But I wanted to want it.
Let’s not forget to factor in that I felt entirely unattractive. And lazy. My medications made me put on weight, but my lack of mobility made it almost impossible to lose it. I was no longer the woman my husband fell in love with or found irresistible. I was a side effect — a negative side effect.
For the longest time, our sex life became stagnant. Worse still, we lost the tenderness. Even just having his big man arms around me was painful. I was afraid to have him touch me, dreading the pain, and he was afraid to try, knowing he would face rejection yet again.
I was certain I would lose him. I felt completely alone. This was not an issue I felt I could discuss with anyone. I believed no one would understand.
Finally the fear and insecurities and thoughts of driving him away pushed me to find a solution. I read every article and blog I could find and educated myself on how to safely, comfortably enjoy relations with a condition such as EDS. We have adapted, and in the process found a new, higher level of affection for one another that we’d never achieved before. While we may not be as animalistic as we once had been, we are exactly where we need to be.
Having a chronic illness doesn’t need to be the end of the road for your sex life. It might just need to be rerouted.
“Any child will tell you that even the kindest and gentlest of dogs will bite you if you yank it ears and pull its tail long enough. There is a dark side to Asperger’s, and it comes from our childhood dealings with people who do not treat us the way they would like to be treated.” –John Elder Robison
This is an insightful quote from a great book, “Look Me In The Eye: My Life With Asperger’s,” which I recommend all parents of children with Asperger’s read. John Elder Robison is an amazing author, has run various businesses, built the amazing flaming guitars used by rock band KISS, and is a leading advocate for people on the autism spectrum. He was diagnosed with Asperger’s later in life.
The quote describes one word in particular: trauma. Children with Asperger’s or autism are often described as a “square peg” trying to fit into the “round hole” that is the world around them. Along the way they face a lot of discrimination, rejection and let’s face it, abusive behavior from people who don’t understand them and don’t want to learn.
Some examples of the harsh life situations they may encounter include:
· Teachers who are not supportive, as they don’t take the time to understand the individual needs of the child with Asperger’s.
· Strangers making unhelpful comments and remarks, passing judgment on how the child is behaving, even when it’s not their business and they don’t understand what’s happening.
· Family members being critical and judgmental too. Again this tends to be based on a lack of understanding of Asperger’s and autism.
It’s little wonder that in the face of these negative life experiences, many children on the autism spectrum become traumatized to some degree. Trauma can show itself in many different ways, including school refusal, self harm, total withdrawal to their computer, not wanting to do anything outside home, anxiety, depression and even suicide attempts. These can be difficult subjects to discuss, but they are so important.
Society does not tend to make things easy for those on the autism spectrum. The odds are stacked pretty high against them. So as a parent you are just doing what you need to do to help them survive and hopefully one day thrive in a world that’s not quite built for them.
So don’t take unfair accusations of “helicopter parenting” to heart — it’s essential that you keep on supporting your child every step of the way. Push them when it’s right to do so (to help them grow), but at the same time be aware of their limits. It’s quite a tightrope to walk, but you do it every day! Please ignore any of the doubters, critics or online trolls who tell you differently. You do an amazing job for your amazing child, and you should never forget that.
After struggling with mental illness my entire life, a miraculous thing happened a couple of years ago. I found my voice and finally began opening up about my mental health struggles. Talking about living with such a debilitating illness has altered my life in so many positive ways and changed my outlook on life itself for the better. For the most part, I have been met with wonderful support, not only from others who are struggling as well but also by those who, though they have never experienced mental illness firsthand, yearn to understand and empathize with the plight of others in their lives.
And then there are the trolls.
Those lovely people who relish in commenting on other people’s lives for no other reason than to accuse and attack.
They inform me that my mental illness “is all in my head.”
They tell me “everyone has problems,” say I “should stop having a pity party” and “just get over it.”
And they suggest I’m just looking for attention and wanting others to feel sorry for me.
Though I always try to remind myself “water off a duck’s back,” those comments honestly eat at me because I have never seen myself as seeking attention or wanting anyone to feel bad for me.
As a matter of fact, for most of my life, I kept my struggles largely to myself. I did not want to “burden” anyone else with my problems, especially problems they neither caused or would be able to solve. Many of my friends were genuinely surprised when they finally heard about what I’ve been through because I kept so much to myself. I’ve been described as one of the happiest, sweetest depressed people that most will ever meet because I refuse to let my illness defeat or define me.
I also personally have never wanted anyone to pity me. Yes, I have been through a lot of trauma in my life. And yes, I am struggling with a lifelong debilitating mental illness as well as multiple meningioma tumors on my brain. But you know what? I’m still here, still fighting, every single day. I fight to stay healthy and to stay positive, despite my own brain constantly trying to convince me otherwise.
Yet I am quick to tell others not to feel sorry for me for the simple fact I am still here. I am a survivor. If you must feel sorry for someone, feel sorry for all those who have lost their battle with mental illness. Feel sorry for all those who suffered in silence and died never finding their voice.
The question remains:
If I am not looking for attention or for pity, why am I writing?
I write so others can better understand an illness that affects millions of people every year yet is still widely misunderstood and stigmatized.
I write because I know there are others out there who are struggling but don’t have the words to fully articulate the battles they are fighting every single day.
I write because I should not be ashamed of my illness or forced into silence due to other people’s ignorance, misinformation, lack of compassion or any other stigma they carry regarding my condition.
I don’t write for a pat on the back from anyone, either. I don’t need a “good job,” a certificate of merit or a gold star. I need others to know they’re not alone. I need them to be OK, to keep fighting, to not give up. If my words can help even one person, or five, or ten, then I have made a positive difference in this world and that is enough for me.
Imagine silently struggling for years with an illness nobody else can see. The entire time, friends and family are repeatedly asking what is wrong with you, why you seem so different, so distant, why you’re not able to do everything you used to be able to do. Imagine spending your life being expected to apologize just for being ill.
If your best friend invites you along for a 5K run and you decline, explaining the chemotherapy your doctors gave you to fight your cancer has you too worn out and drained to go along, your friend will most likely show compassion, support and understanding. They will accept you are struggling with an illness you neither asked for nor have any control over, and you are trying your best to heal and get healthy again.
Your family would likely not question if you spent whole days in bed while struggling to beat cancer either. They just want you to do whatever you need to do to get better. Nobody would likely accuse you of looking for attention simply for describing what you are going through and explaining you currently don’t feel capable of joining in.
Replace cancer with many other debilitating illnesses and conditions and the story likely remains unchanged.
Can’t go running because you have a heart condition and you physically cannot handle it in your current state? Not a problem.
Spent the day in bed because your diabetes has flared up and struggling to balance your sugar again has you exhausted? Asthma acting up and you’re struggling to even breathe so you need to rest? Rheumatoid arthritis flare-up and you can barely stand, let alone run? Get some rest and feel better. It’s OK. Everyone understands. Take care of yourself.
However, if you are struggling with a mental illness, compassion often goes right out the window.
You’re told to “suck it up,” to “stop feeling sorry for yourself,” to stop making excuses, get off your butt and get over it.”
“Stop being a baby.”
“Stop looking for attention.”
“Just stop altogether.”
The truth is, we shouldn’t have to stop acknowledging our existence or our reality.
Our medical condition is just as valid as any other one. It, too, was diagnosed by a doctor. It, too, needs medical treatment. And it, too, deserves to be acknowledged. We deserve the same compassion and empathy you’d show to anyone else who is sick with any other debilitating illness.
I spent 40 years apologizing. “I’m sorry I can’t do more.” “I’m sorry I’m such a mess.” “I’m sorry I’m so broken.” “I’m sorry I’m having such an off day.” “I’m sorry I let everyone down.” “I’m sorry for existing.” “I’m sorry for being sick.”
But you know what?
I shouldn’t have apologized all those times. I had done nothing wrong. I was, and still am, struggling with a valid and verifiable medical condition. I did not ask to be sick, nor did I do anything to cause this illness. I was born with it hardwired into my genetics.
And these days, I am completely unapologetic for my condition.
Am I looking for attention?
All I want, and feel I rightfully deserve, is the same acknowledgment, compassion and understanding as people would show anyone else with any other serious medical condition.
Do I want anyone to feel sorry for me?
I don’t wallow in my condition but I don’t minimize it or sugarcoat it either. I am apologetically and blatantly honest about what it is like living with mental illness because the only way to fight misconceptions and stigma is with the truth.
I’m a fighter. I am so much more than my illness and I refuse to let it define me or beat me. Don’t pity me; cheer me on for the fact I am still going. Be proud of the fact I am taking the lemons life has given me and transforming them into something positive to help others.
I talk about my struggles with mental illness because I refuse to stay silent any longer. I refuse to pretend I am fine when I am not, or to apologize when I have done nothing wrong. Most importantly, I write about what it is like because there are too many others out there struggling who need to know they are not alone.
Trolls are going to troll. They attack what they don’t care to understand. It is easier for them to pass judgment than to show compassion or try to walk a mile in someone else’s shoes.
But I don’t write for trolls.
I write for that teenager sitting alone in a dark room, feeling all alone, convinced nobody else could possibly understand. I write for that widow, sitting in an empty house, struggling to find a reason to pull themselves out of bed. I write for that person who keeps thinking about suicide. I write to add my voice and my story to the collective of everyone struggling with mental illness.
I write to let them all know they are not alone and that others understand. I write so they know they, too, are more than their diagnosis and they don’t have to let it define them. I write to remind them that they, too, are fighters and survivors and to help them find the courage and the words to tell their own stories. I write to encourage them to get the help they desperately need.
I also write for that parent who desperately wants to understand why their teenager has begun isolating themselves and never smiles anymore. I write for that husband who needs to understand why his wife just hasn’t been the same since she had the baby. I write for everyone who has lost someone to suicide or has sat there dumbfounded after a loved one’s attempt, unsure of what to say so their world would make sense again. I write for everyone who desperately wants to understand this illness, though they have never experienced it themselves.
I don’t write to appease trolls — I have no place in my life anymore for those who spend their lives spreading negativity, judgment and hatred. They are not my target audience. Not my circus. Not my monkeys. Not my problem. I will spend just as much time caring about their opinions as they have spent empathizing with my condition.
For those who I am hoping to reach — please don’t give up. Don’t lose hope. You are so much more than your illness. You, too, are a fighter. A survivor. You, too, can get through this. Know you are not alone. Don’t be afraid to reach out, to speak up. There is no shame in asking for help, for needing to see a doctor for your medical condition. Stay strong. You’ve got this.
A version of this article originally appeared on Unlovable.
I read a lot. As a writer, I read to know the world, to gain knowledge and to understand parts of myself more deeply. When I was first diagnosed with borderline personality disorder (BPD) at 26, I read all I could. I wanted to understand what to expect, both of myself and of how my relationships would be impacted.
Most articles implied that people with BPD have little or no empathy for others. We are “reactive,” they said, and “hostile” with terrible mood swings and splitting symptoms (seeing issues in black and white) that could make us hard to trust.
The disorder is highly stigmatized and reading about it legitimately freaked me out. I’m a lesbian, so I already have my own set of hurdles to navigate. Adding this to the mix made me feel like I was doomed to be alone forever. It made me feel like all my relationships (friends included) were doomed to fail. But were they?
As someone with little family support, my friends have always been my lifeline. They have picked me up whenever I need help, made jokes, given me places to stay, cooked me meals, forgiven me for acting like a fool, bought me presents and told me everything was going to be OK. I would not be alive without the help of my friends, and I am incredibly thankful for them. However, despite my fears, my relationships did not dissolve when I was diagnosed. Instead, my diagnosis gave me the tools and knowledge I needed to strengthen them.
Relationships with those with BPD take a lot of work, but (I believe) are incredibly fulfilling. In my experience, people with BPD can be extremely empathetic. We are loyal and headstrong in fighting for our friends’ needs. Yet, too, I know I can be reactive. The slights I feel are always magnified, and I get my feelings hurt easily and deeply. But I have great friends who practice incredible understanding and empathy with me. The tactics they use are most likely innate but have helped our relationship stay strong.
Here are some things you can do to strengthen the stability of your relationship with someone who has BPD:
1. Create predictability and routine within the relationship wherever you can.
I have a routine with one of my best friends — I go to her house on Sundays and do laundry there. We chat, go to brunch or walk the dogs. Sometimes, we just sit together and work on our computers. But it’s always on Sunday, and around the same time, though not every week. This simple routine gives me so much peace of mind. I don’t worry about when I’ll see her next. I know I have a safe, familiar space to be around her, and that has helped ground our friendship in a huge way.
2. Find time to spend with us one-on-one when you’re able.
I know this much about myself — I like attention. Most people with BPD do. But we like meaningful, true attention, and this connection is often hard for us to experience in groups as we may feel like we have to “compete” to be noticed. One of my co-workers is great about understanding this. If I’m feeling down, she always asks me to go for a walk or get out of the office for a bit, just the two of us. I always return in a better mood. Spending time alone with a friend reduces distractions and helps me feel like I am being prioritized.
3. Communicate your needs honestly and openly.
It’s so helpful when a friend states what they need in open, honest terms. That way, there is less for me to decode and less for me to misinterpret. If a friend tells me, “hey, I’m not in the mental space to deal with this right now,” I know I need to reach out to someone else. If someone with BPD is asking too much of you, tell us during a calm, quiet moment together. Most of us will feel bad about it and will change our behavior. We don’t want to hurt our friends, but we may struggle with boundaries. If you set some, it helps us create rules to follow within the relationship, which relates back to suggestion one.
4. Respond to text messages promptly, when able.
This is SUCH a nice, thoughtful thing to do. It reduces so much of our worry about abandonment (we are always worrying about being abandoned). A semi-prompt reply to a text just makes our whole lives easier.
5. Don’t worry about de-escalating us.
We are responsible for our own actions, and many of us work hard to recognize when we’re having a reactive episode and deal with it accordingly. When I’m having a reactive episode, the best thing my friends can tell me is, “It’s OK. I understand. I hear you. It will pass.” We don’t need you to solve our anger or frustration, but simply bear witness to the pain — we experience heightened pain and emotions that can make life seem unbearable at times. It makes us feel seen and validated, and that’s really all that most of us want.
6. Give us time if we’ve recently gotten in a fight.
People with BPD are so loyal. We love our friends, and we always come back to them, even if we get upset sometimes. I know with some, especially with those who have been or are my “favorite person,” I can often get worked up about little things. Rationally, I know I shouldn’t. But I do. The best thing my friends do when I get like this is to give me time to get over it. I’m more of a “cold-fish” with my BPD. When I’m upset, I go quiet and pull away from people instead of getting in their face about it. However, if someone addresses me when I’m like this, I’m more likely to feel attacked and react aggressively. My friends giving me time to cool down helps both of us reflect and move forward without big blowups.
I realize the suggestions listed above are sometimes not feasible. None of us can give 100% to our relationships all the time. That’s OK. But doing one or two semi-frequently will help a lot. In addition, we — people with BPD — must recognize our harmful behaviors and do our best to make sure they are not impacting you.
A lot of times, I feel guilty about my BPD and how it affects my relationships. I don’t want anyone to struggle to be friends with me. But, as I’ve grown, I too recognize that all relationships take work. Everyone has their own baggage, their own issues to deal with. Although I have avoided romantic relationships (both purposefully and non-purposefully) since my diagnosis, I realize now that my BPD is not the relationship death sentence I once thought it was.
Every so often, I get a surge of motivation to pursue personal growth. It comes after I’m inspired by a story of triumph, usually from someone who excelled at self-care. I imagine what it would be like to achieve true happiness, and I fantasize about a utopia where I’m no longer plagued by anxiety and depression.
In these moments, my type-A personality often kicks me into full-on planner mode. I create lists, set goals and shelve out as much time for myself as possible. I push myself to the next level at weekly yoga classes and begin a daily meditation practice. I read mental health articles so often that Google and Facebook algorithms identify this habit and feed me with more strategies than I can keep up with. I feel like a self-care extraordinaire, riding the gushing waves of hope and positivity.
It’s a beautiful feeling until the waves inevitably crash and pull me under — life gets in the way and I lose momentum faster than the routine sets in. My mind buzzes with 20 thoughts a minute during meditation. My eyes spend more time staring at screens than staring into the back of my eyelids. I feel like a complete failure. Eventually, I quit everything and sink into a state of apathy that only goes away when I receive my next burst of energy, and start the cycle over again.
Romanticizing the journey to transformation often gives me a false sense of hope that disappears the second I don’t feel like I’m succeeding. I fall into a pattern of learned helplessness and expect failure the next time I attempt self-care.
Recognizing my fatal flaws, I hope to break this negative cycle once and for all. To get started, I’ve created a list of five reminders for myself, and for others, to help us push through the hurdles and maintain a healthy self-care regimen.
1. Self-care looks different for everyone.
Many of us fall to the pressures of trying the latest self-care trend, only to find that it doesn’t suit our needs or give us the same results as someone else. While it doesn’t hurt to try new things, keep in mind what works for others may not work for you. There’s nothing wrong with focusing on practices that seem most comfortable and achievable for you and your lifestyle.
Self-care doesn’t have to involve deep-tissue massages, Tibetan singing bowls or overpriced bath bombs. The costs of spa treatments and boutique studio classes will add up, so it’s important to remember you don’t have to break the bank in order to treat yourself better. Sometimes self-care can be as simple as going on a nature walk, turning off your phone or finally reading the book that’s been collecting dust on your shelf.
3. You don’t have to do it alone, but you can if you want!
Time to yourself can be reinvigorating, especially if you’re an introvert like me, but that doesn’t mean you have to do every activity in isolation. Fitness classes are especially fun if you have a motivational workout partner. Plus, with a friend joining you on your self-care journey, you’ll have opportunities to improve together and hold each other accountable.
4. It’s OK if you fall out of a routine.
There will always be competing priorities that will get in the way of your routine. While you should treat time for yourself the same way you would treat the time you set aside for work-related meetings, don’t beat yourself up for missing a day or two. There’s no need to go twice as hard the next time you get back into a routine either. You can’t make up lost time, and that’s OK. Acknowledge the misstep, pick it back up the next week and keep on going.
5. It takes time.
We’ve become a world so obsessed with the idea of self-care and quick-results that we rarely stop and think about how challenging it can all be. We see the before and after photo, but we rarely see the struggle happening somewhere in-between. Focus on progress rather than results. Results won’t happen in a day, but progress happens each and every time you make a conscious decision to care for yourself.
What else would you add to this list? Leave a comment below or tweet me @doryvu.