At Girl Precarious, we believe that the conversation surrounding mental health and invisible illnesses should be lead by those affected by the stigma directly. If you’re ready to share your story and end the stigma against what affects you, we’re here to help you. Check out some of our reader’s stories below.
To submit your story, e-mail us at GirlPrecarious@gmail.com.
Melinda began experiencing symptoms of Crohn’s Disease during her first semester of college with episodes of severe stomach pain and an inability to keep any nutrition in her body. Melinda was losing her hair, experiencing severe fever symptoms and struggling with massive panic attacks. When she first brought her symptoms up to a medical professional, they prescribed her an anti-anxiety medication. The symptoms worsened when she returned to college for her second semester. The lack of adequate medical care and a continuing increase in Melinda’s symptoms caused Melinda to experience a severe depressive state. “The day I took my last exam, I packed up my dorm and my parents came to get me. I spent the night before on the floor in the bathroom begging for enough sleep for a clear mind for the exam I was about to take. I missed out on social events and felt so disconnected from my friends at that point due to the extreme lack of energy and isolation, I didn’t bother to tell anyone I was leaving,” Melinda continues, “Once I got home I learned of Crohn’s Disease from a quick google search and I just knew. I scheduled an appointment with a GI and they told me there was no way it could be Crohn’s because there was no history of it in the family and I ‘was too young to have a disease like that.’ I went into my colonoscopy fairly confident of what they’d find and came out affirmed.”
After being officially diagnosed, Melinda underwent a bout of trial and error. Her symptoms rarely seemed to get better, no matter what the doctors prescribed. Melinda underwent chemotherapy, steroids, and injectable biologics. Following stay after stay in the hospital for her condition, Melinda reports that the hardest thing she’s had to undergo due to her Crohn’s Disease was the mental health side effects due to the uncertainty of her situation: “With the constant flux of flare and remission, I often find myself fighting a mental battle of ‘how care-free can I afford to be today?’ I am constantly re-writing my narrative. I am constantly reinventing my outlook on this disease and how much hold I allow it to have on my life. When you have an invisible illness that no one knows why it exists or how it exists or what triggers it to flare up, you have to figure it out for yourself and make your own rules if you want to have a healthy mindset.”Melinda states that it isn’t just the food she eats, as people think. Her flare ups are predominantly caused by the stress in her life. She has found that people, even loved ones, typically have an opinion on how she eats and treats her body, which is misleading. When asked what she wished everyone knew about having her invisible disease, she stated “I’ve been blessed to have an incredibly caring support system, but one of the main things I’ve had to remind them is to be supportive in all ways of ALL of my decisions, even if they don’t agree with them. If you know someone with an invisible illness, autoimmune disease, or condition, remember that they have every right to treat their body however they decide is best for them.”
Elita lives with depression and Binge Eating Disorder with bulimic features.
Elita reports that her eating disorders began around the age of eleven. Because she was what was perceived by her parents to be overweight, she was never allowed to eat “junk” foods or sweet treats. In middle school, Elita wasn’t allowed to play with her neighborhood friends until she had exercised on a treadmill for half an hour prior. Because her access to food was limited to healthy food only, Elita would binge eat snacks at her friend’s house in secret. This behavior formed a lifelong pattern for Elita and stoked her future depression.
When Elita was married, she would hide her binge eating from her husband everyone else in her life. She became so insecure about her weight that she was terrified someone would take her picture, so she made it a point to be behind the camera by adopting photography as a skill.
Eating disorders are a lifelong struggle with truly devastating results. Even when someone is able to remove themselves successfully through intensive therapy, their bodies can suffer lifelong side effects. Eating disorders as an experience alone, as well as the circumstances that lead up to having one can cause a lifelong struggle not unlike PTSD. “I still find myself looking to binge and secretly eat in situations where I have anxiety and I have had to make real choices in my behavior to not do those things.”
On the subject of recovery, Elita states that she was in therapy for a good portion of her early 20s. “I actually did go to therapy in my early 20s where I talked through a lot of my personal issues and how I let other people influence how I felt about myself. I had to change my behavior and acknowledge how I reacted to situations. Instead of eating when I’m upset with someone, I’ve learned to talk to them about it. If I really have an urge to eat and know I’m not actually hungry I will drink a glass of water or go do something productive,” continuing, Elita says “I actually changed my entire life in the past two years in order to better understand myself and how I deal with my depression, anxiety and eating disorders. I made hard decisions; moved home from England. I got divorced and listened to myself. I lost friendships and changed careers, all in the name of a better life for myself. I found that the more depressed I got the more I ate. I started choosing things that brought me joy not just what I thought someone wanted from me.”
Elita recommends literature that helped her through her experience:
“I read a few books recently that I would highly recommend, the first one being ‘The Fuck It Diet’ by Caroline Dooner. She talks about how dieting isn’t sustainable and we need to listen to our bodies more and trust ourselves. One of my favorite activities from the book is to list 5 things about yourself that you love that have nothing to do with how you look. The other would be ‘Fat is a Feminist Issue,’ by Susie Orbach.”
When asked what she wished everyone knew about her condition, Elita said “I wish people would understand that bulimia isn’t a girl running to the bathroom to shove her fingers down her throat after every meal. bulimia can be the girl who is anxious and depressed just trying to not understand her emotions and self worth.”
Meet Chelsie! Chelsie was diagnosed with Alice In Wonderland Syndrome (AWS) when she was eight years old. ASW is an extremely rare condition in which causes temporary episodes of distorted perception and disorientation. The reference to Alice In Wonderland comes from the common symptom of feeling that the body is growing, or items are shrinking. After having complained to her mother about her symptoms, it was brought up to her doctor. The doctor immediately knew what it was, but ran some preliminary tests to make sure they ruled everything out.
Chelsie has spent a portion of her adult life getting strange looks from strangers when she talks about her condition, and convincing people that it is, in fact, a diagnosable condition.
Of her episodes, Chelsie states “I am 100% aware when the episode is happening that it’s not real, and it will pass. It’s not something I can make go away, I just have to ride it out. When it’s happening, it’s extremely uncomfortable. I can literally feel my body growing or shrinking. It feels like the ground is flying up at my face. This is my reality, even if other people can’t feel or see it.”
With the help of her doctors, Chelsie was able to identify her triggers and work towards avoiding the episodes all together, but sometimes that fails. There are no identifiable treatments for the condition, and only speculation around what causes it in the first place.
One of the tests that Chelsie had to undergo as a child was to rule out schizophrenia as a cause for her symptoms. “I feel like anytime there is some sort of delusion involved, it’s typically chalked up to schizophrenia first.”
When asked what she wished everyone knew about AWS, Chelsie responded: “That it is REAL. I would urge loved ones of people suffering from symptoms of AWS to believe the person that is suffering and be empathetic. Just because you haven’t heard of something or can’t imagine suffering from it doesn’t mean it’s not real.”
Dani was diagnosed with PTSD (Post Traumatic Stress Disorder) in 2017 at the age of 30. After stopping her car on the side of the highway to help a woman who had been in an accident, Dani was hit by a negligent driver (who was texting while driving). The incident resulted in Dani losing both of her legs and almost her life. “In a way, even with the second chance, a part of you that has nothing to do with your physical self still dies after a trauma of that magnitude,” Dani continues, “I don’t even know if I’ve accepted it, even now.”
Growing up, Dani was always given the impression that depression, anxiety, and symptoms of PTSD were reserved as signs of weakness, or behaviors exhibited by people seeking attention. When Dani was diagnosed with PTSD, she didn’t want to be perceived that way. “Even with evolving as much as I have, I still struggle with the diagnosis of PTSD. I don’t know if it’s because I don’t want to not feel ‘strong,’ or if it’s because I wanted a normal life… sometimes I don’t want to acknowledge that something that terrible happened to me, while other people get to continue on with their lives physically untouched in that way.”
Following her surgery, Dani was told that she would have residual trauma responses. What they didn’t tell her, she reports, is that fireworks would pique her anxiety because it sounded like two cars crashing, or that a car backing out of a parking space while traversing through a parking lot with her family would send her into cold sweats. Worse of all, Dani experienced traumatic intrusive thoughts about her children being ejected from vehicles. “I can’t even send my daughter out to the mailbox without a mild undercurrent of panic. The irony of all this is that the responses are all-encompassing of roads, vehicles, drivers– my car was shut off and I was outside of my vehicle when the accident happened, so it seems wickedly unfair that all of those things have become major triggers.”
Dani states that she doesn’t feel PTSD is widely understood yet by the general public, and feels that PTSD is massively misrepresented in the media. “I don’t even think they can be portrayed accurately. They try to get the point across in movies so any Tom, Dick, or Harry can say ‘Oh, those flashbacks mean the person is having a moment of PTSD,’ but there is just no mimicking the absolute terror over seemingly ‘nothing,’ or the severity of panic attacks and intrusive thoughts as you’re trying to fall asleep.”
Dani acknowledges that the treatment resources for people suffering with PTSD have become increasingly more effective in the past few decades, but we have a long way to go before it’s fully understood and accepted on a larger scale by society.
“PTSD is embarrassing,” Dani states when asked what she wishes everyone understood about her condition, “It’s embarrassing to have to watch neurotypical people react to everyday situations normally, and it’s embarrassing to be cognizant of when you, as the person with PTSD, are responding to something improperly. You have no control over it. You can’t stop it. It’s an all consuming, omnipresent beast that is always just a whisper away. It lives in your own head with no possible way to escape.”
In regards to her recovery, Dani states that she’s still working on self-care. “Sometimes,” she says, “I throw myself into work. I’m a massage therapist and I teach at Sunstate Academy in Fort Myers, Florida. Sometimes I lock myself away and write until every fiber of my being feels at peace.”
When asked what Dani would say to someone who had just received their diagnosis of PTSD, she responded with “PTSD is just grief. It is your mind’s way of telling your soul that it needs taken care of due to factors outside of your immediate control. Be patient with yourself.”
Chelsea was diagnosed with Occipital Neuralgia (inflamed or injured nerves on the top spinal cord and scalp) in 2017, and Bipolar Disorder II in 2019. As a professional nurse with experience working in the mental health field, Chelsea states that she suspected her diagnosis of bipolar disorder before it was officially given.
When asked what she felt loved ones could do in order to support her with her mood disorder, Chelsea stated that she sometimes felt like people in her life “riled her up” on purpose as a form of entertainment. She stresses that it’s important to respect the boundaries set forth by someone with a mood disorder, and try to exhibit patience when understanding that she isn’t always able to control her emotional responses.
Chelsea stated that as both a patient and a professional in the medical field, she feels the system makes it difficult to receive an accurate diagnosis, which makes it hard to receive the appropriate treatment.
Regarding her diagnosis of Occipital Neuralgia, Chelsea states that she felt “devastated” when she received the confirmation. “It felt like a death sentence, not only literally, but in regards to my overall quality of life and career aspirations.”
Chelsea feels that her invisible illness has greatly affected her mental health. “Occipital Neuralgia causes around the clock headaches with horrendous ‘peak’ points throughout the day, every day. I have felt like a guinea pig for my doctors, having undergone bad medication adjustments and an upcoming surgery, which only has a 50/50 chance of actually working.”
Chelsea reports that her constant state of physical pain has put pressure on her personal life, relationships, and work performance. “I feel like a shell of a person,” She continues, “I’ve suffered suicidal ideation because I just don’t know how to handle the pain sometimes.”
If there is one thing that can be learned from experiences like the one Chelsea elected to share, it’s that the relationship between invisible illnesses and mental health are closer connected than we typically acknowledge as a society. If you know someone that is dealing with a painful or debilitating condition or disease, ask them what you can do to help ease their suffering. More often than not, just acknowledging their struggle is a massive first step in better supporting someone you care about.
Ren was diagnosed as HIV positive in 2018, and undetectable (meaning her vital count is in a good place, and can not be transmitted through sexual interactions) in 2019. She was diagnosed at the end of her last inpatient experience in a dual diagnosis treatment facility, which she considers both the worst possible time to receive such dire news, and also the best. To a degree, she felt she knew deep down that she was going to test positive, but no amount of self realization could help dull the impact of receiving the diagnosis.
At the time, Ren reports that she felt “willfully ignorant” to educating herself on the diagnosis, because she was still engulfed in active addiction to heroin. “At that point,” she states, “I was ready to die young.”
“In my own eyes, living with HIV is very much an invisible illness in it’s own right. Danny Roberts (who starred in a season of MTV’s Real World way back in 2000) came forward with his status as HIV positive, and something he said in the interview has always stuck with me as the perfect example. He stated that living with the disease was like having an extremely outdated smartphone, an iPhone 4 if you will. Not only that, but this ‘phone’ also had this app permanently attached that was constantly sucking away heaps of energy.”
Ren expressed that she felt uncomfortable discussing her diagnosis of HIV positive sometimes, because the symptoms and “flare ups” aren’t visible to others. Additionally, there is still the harmful stigma that being HIV positive is a self inflicted condition, which generates a lot of hatred surrounding the subject. Just like with any mental illness, the negative impression that the general public has against individuals diagnosed with HIV in any capacity causes severe depression, anxiety, and suicidal ideation.
“It’s a silent battle that I only feel comfortable sharing with my close friends, and my doctors. I HAVE a voice, I can only imagine what it feels like for the people that are suffering in silence. Everyone deserves representation in their successes, trials, and tribulations when it comes to any illness, invisible or otherwise.”
When asked how her diagnosis has affected her mental health, she responded with “In some of the best ways possible. Since this diagnosis I have successfully put my heroin addiction into remission. I’ve pursued goals, dreams, and knocked out quite a few of them. I haven’t looked back. I found help all on my own. I got grants from a foundation known as the Ryan White foundation. They cover my medication at no cost and provided me with a primary care doctor.”
As a final note, Ren believes that education is the key to ending the stigma. The fact that the majority of people don’t actually realize what HIV is, how it affects people, how it’s transmitted (when transmittable) is incredibly damaging to our youth and the mental health of those that are affected by HIV.
Chiari (Kee-Ah-Ree) Malformation is a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward and blocking the flow of spinal fluid.
For Destiny, Chiari Malformation has caused loss of hearing in her right ear (and some in her left), severe pressure migraines, vision loss, memory loss, Tinnitus, balance problems, slurred speech and stumbling over words, anxiety, sleeping problems, and GI issues.
“It’s negatively impacted basically every aspect of my life. I’ve had to have C Sections instead of natural birth. The anesthesiologists for my first birth wasn’t comfortable with giving me an epidural so they put me to sleep. It makes me anxious 24/7 to the point that I’ve had a hard time keeping a job because I’m just too anxious to go. I have to be on a medication that makes my ears ring and causes Pins and Needles in my hands and feet. Nobody really knows about Chiari. I feel like every time I have to go to the doctors or ER I have to explain what it is.”
If someone’s Chiari Malformation isn’t too severe, it can just be monitored. Sometimes it requires a shunt being placed (which helps the flow of the spinal fluid), but they’re known to fail. Ultimately, there is a pretty drastic procedure that can be done, where they cut off a piece of the skull to allow more room for fluid, but this also has been known to fail.
“I hate explaining it all the time. I feel like people think I’m lazy and overweight but it’s more of I can’t bend over for long periods of time, climb things, lift heavy objects, or do anything that’ll make my head jolt. I’m constantly asking people ‘huh?’ when they say something to me, because I can’t hear anything. It causes processing issues, which leads me to delay in my response when I’m trying to have a conversation. Most people don’t know this, but I actually rely on reading their lips. Ultimately, I don’t like being treated like I’m different, but it would be nice if people just had a little more patience and understanding with me.”
Kohleen was diagnosed with Panic Disorder at the age of 12. The symptoms that she suffers range in severity from minor and uncomfortable (shortness of breath and the sensation of a tight chest) to terrifying and truly debilitating (hyperventilating and extreme fear in crowded areas). She has hit points in her disorder where she felt like she absolutely could lose her life.
“When I was younger I would sit in class and think I was having an asthma attack, but I didn’t have asthma. I felt like I couldn’t breathe. I’d get dizzy and feel a strong drive to escape whatever situation I was in.”
Frustratingly, Kohleen feels that her disorder is often times pushed off by society as general anxiety. Kohleen’s Panic Disorder co-exists alongside a diagnosis of agoraphobia, which means she suffers great difficulty even leaving her house sometimes. With her mental illnesses combined, Kohleen was forced to drop out of high school, as the stress put forth by the obligation was breaching dangerous grounds.
By the age of 25, Kohleen had developed healthy coping skills that have greatly improved her livelihood. She now resides in Southwest Florida and accomplished her goal to become a professional dog groomer.
Even though she still struggles daily with the symptoms of her disorder, it’s important she imparts this message: “I have to live with this disorder, but that doesn’t mean I’m afraid of life, or living it to my fullest. It just takes a little more patience and effort to get there.”