Erica Joy

@hopenlyme | contributor
Hopenly battling lupus, fibromyalgia, IBS, hashitoxicosis & mental illness. Aspire to a life that brings you joy #chronicillnesswarrior
Community Voices

Are you too sensitive?

Throughout our lives, we are constantly told how to feel by parents, teachers, coaches, friends, and bosses. We try to meld our emotions to fit how we’re being told to feel when in reality, emotions are out of our control. When arguing with someone, it’s expected to feel angry. But it’s completely acceptable to also feel sadness, shame, surprise, or guilt. Some people feel motivated when their coach yells at them during a game; others feel embarrassed or ashamed. Some people hear a joke that makes them feel happy, while other people may feel angry upon hearing that same joke.

Finding Nemo – A Simplified Example

Three 8 year-olds are having a playdate – John, Lucy, and Davey – and they decide to watch Finding Nemo. For those of you who haven’t seen the movie, a shark kills Nemo’s mom in the very opening scene. Upon seeing this, all 3 children start crying and their parents come over to comfort them. Eventually, the movie continues, the parents go back to what they were previously doing, and the kids’ attention shifts back to the movie as it continues.

The movie ends on a good note when Nemo and his father reunite, and the children are once again happy. Like typical 8 year-olds, John and Lucy quickly lose interest and go outside to play.

Davey, however, remains on the couch crying. When his mother comes over to console him, she is surprised to hear what is upsetting him. Davey tells her about Nemo’s mother dying in the beginning of the movie, frustrated that he has to explain this again to his mother. In response, Davey’s mother flippantly tells him “it’s only a movie, go and play outside just like the other kids”.

In doing this, she is not only dismissing Davey’s feelings and emotions, but she is also telling him that his feelings are abnormal, especially in comparison to his peers.

The Emotional Roller Coaster

When I was young, my parents used to call me a rollercoaster because I had highs and lows. Anytime I was “too high”, they would tell me to chill out – “We don’t want to deal with your crash later”. It would make me so angry.

As I got older, I realized that a lot of these “lows” came as a result of being referred to as a rollercoaster or being told I was too happy. But I never understood how it was possible to be “too happy” or what could possibly be wrong with being happy.

When I heard the reference to Finding Nemo, it felt like a light bulb went off; things started to make sense. I couldn’t stop thinking of examples in my life when my feelings and emotions were not only dismissed but I was made to feel like there was something wrong with me for feeling the way I did.

Invalidating Environments

The problem in today’s society results from the invalidation of one’s emotions; if they don’t conform to the social norm, we are led to believe that it is wrong to have these thoughts and feelings. These invalidating environments result in the inability to regulate emotions, trust your feelings, tolerate distress, or form realistic goals and expectations.

How many times have you been told:

“It was just a joke”

“Stop being so serious”

“Don’t be so sensitive”

But not everyone is going to think it’s funny, it’s okay to be serious, and you’re not too sensitive. However you feel is okay. Your emotions are valid, which is the foundation of Dialectical Behavioral Therapy (DBT).

Community Voices

The Voices of Self-Doubt

One of the hardest aspects for me to deal with in my #Depression is the self-doubt. The feelings of self-hate and the lack of self-worth can be debilitating. I have a constant stream of thoughts as if on repeat:

You’re not good enough.

Who could ever love you?

You aren’t worthy of anything.

You don’t deserve to be happy.

It becomes so utterly overwhelming it’s impossible to ignore. After years of listening, the thoughts have become second nature. I’ve come to believe that the self-doubt is a part of who I am, a part of my personality, and a part of how I define myself.

The Whispers in Your Ear

Imagine someone sitting on your shoulder. Imagine hearing a whisper behind you.

“You’ll never amount to anything”

Can you hear the cruelty in her voice?

“You’ll never be good enough”

Now imagine hearing that voice, constantly, whispering that kind of negativity in your ear.

She’s there when your alarm goes off in the morning and you contemplate the point of getting out of bed.

She’s trained you to avoid mirrors because when you do see yourself, she’s there to remind you of how ugly and unlovable you are.

She’s there when you see a friend to tell you that they’re talking to you solely out of pity and really don’t want to be there.

She leaves you desperate for others’ approval and taunts you by nearly phishing for compliments, only to immediately convince you of their deceit. “Remember, you aren’t worthy”.

Because of the Whispers

And because of her, you end up questioning all of your decisions, sometimes unable to trust your own judgment.

You refrain from speaking in groups out of fear of sounding stupid or having to explain yourself.

You find yourself constantly asking questions you already know the answers to.

She makes you question all of your accomplishments, giving caveats and excuses – “you only got an A on the test because it was easy; everyone got an A”.

You find yourself apologizing. A lot. Even when you’ve done nothing wrong or don’t know what you’re apologizing for. She’s made you believe you’ve done something to upset someone and you need to fix it. Having someone angry or upset with you only confirms your fears of being unlikable and unwanted, making her whispers louder.

Worst of All

And worst of all are the days when she tells you that your life isn’t worth living. She assures you that nothing will ever get better and the defeat you feel is there to stay.

But on those days, somewhere deep down, there’s another voice that convinces you to keep fighting, move forward, have hope that it will get better.

I wish…

I wish I could keep that voice around. I wish it didn’t take falling into such a dark hole or reaching such a low point to hear that quiet voice.

When I look in the mirror and the self-deprecating thoughts begin to focus on my flaws, I wish I could hear that voice say, “I accept you, just the way you are”.

I wish I could have a conversation and not analyze whether or not the person actually wants to be there.

I wish I didn’t interpret every situation or tone of voice to mean that I did something wrong.

I wish the voices in my head of self-doubt and hate could instead be voices of reason and hope.

I hate you.

I am good enough.

I am loved.

I am worthy.

&

I deserve happiness.

Community Voices

Coming Out Proud - Mental Health Stigma

I am mentally ill, and no, it’s not contagious.

I have #Depression, #Anxiety, and OCD, and I am NOT ashamed despite the discrimination and stigma associated with mental illness in society today.I started my blog to connect and reach others battling chronic and mental illness, and I intended to remain anonymous. But in light of the growing community of people with who have chosen to out themselves, I’ve decided to come out too. I’m joining the fight to ending the stigma. I don’t want to perpetuate the shame and discrimination associated with #MentalHealth by continuing to hide.

While in therapy at an eating disorder treatment center, I learned about the idea of wearing a mask to conceal ourselves from others, whether literally with a painted face of makeup or figuratively by pretending to feel happy when we feel broken inside.

The mask that I wear…

…Represents who I think I should be, what I want people to see, what I wish I could be.

…Portrays someone who is content, happy, strong and brave.

…Conceals my feelings of isolation and loneliness.Without my mask, I feared I’d be unwanted, unlovable, unwelcome, and ashamed.

Despite these fears, society’s acceptance of millions of others as they “come out” about their has inspired me to do the same. It’s time to take off the mask.

My Story

The depression and anxiety started when I was seventeen. I was referred to a psychologist specializing in mindfulness and relaxation techniques by my primary care doctor because of my IBS and what I now know to be pelvic floor dysfunction.

I started anti-depressants and anti-anxiety meds the following year, but as things with my other health conditions got worse, my continued to deteriorate. The meds weren’t working, I was ashamed to talk to anyone about it besides my parents, and because they were uninformed, my parents believed in “mind over matter” and thought meds weren’t necessary.

A new psychiatrist, med changes, and additional therapy led to an additional diagnosis and years of more unsuccessful outcomes. When one health condition acted up, all of the others got even worse. Every doctor liked to pass the buck: the depression is because of the #Fibromyalgia, the IBS is because of the , the pelvic floor dysfunction is because of the fibromyalgia, and so on and so forth. I can’t even count how many times I’ve heard the “chicken or the egg?” speech. But regardless, no one was positively affecting anything.

After a certain point, I felt like I was swimming upstream. I didn’t feel like fighting anymore and was making plans to take my life.

I wish back then I had known someone who’d actually been where I was and gotten to the other side. Fortunately enough, I had my sister. But millions of others suffering today aren’t as fortunate.I was able to find something that worked for me at that point in my life and get me to the other side, Dialectical Behavioral Therapy (DBT).

My point is that the more accepting we are of , the less ashamed we’ll be to talk about it, to seek help for it and to be it.

We are fighters. We are warriors. We are survivors. And that shouldn’t be something to feel ashamed of.I want to end the stigma of . I want to lessen the power it has today.

Community Voices

Coming Out Proud - Mental Illness Stigma

I am mentally ill, and no, it’s not contagious.

I have #Depression, #Anxiety, and OCD, and I am NOT ashamed despite the discrimination and stigma associated with mental illness in society today.

I started my blog to connect and reach others battling chronic and mental illness, and I intended to remain anonymous. But in light of the growing community of people with who have chosen to out themselves, I’ve decided to come out too. I’m joining the fight to ending the stigma. I don’t want to perpetuate the shame and discrimination associated with #MentalHealth by continuing to hide.

While in therapy at an eating disorder treatment center, I learned about the idea of wearing a mask to conceal ourselves from others, whether literally with a painted face of makeup or figuratively by pretending to feel happy when we feel broken inside.

The Mask That I Wear

…Represents who I think I should be, what I want people to see, what I wish I could be

.…Portrays someone who is content, happy, strong and brave
.…Conceals my feelings of isolation and loneliness.
Without my mask, I feared I’d be unwanted, unlovable, unwelcome, and ashamed.

Despite these fears, society’s acceptance of millions of others as they “come out” about their has inspired me to do the same. It’s time to take off the mask.

My Story

The depression and anxiety started when I was seventeen. I was referred to a psychologist specializing in mindfulness and relaxation techniques by my primary care doctor because of my IBS and what I now know to be pelvic floor dysfunction.

I started anti-depressants and anti-anxiety meds the following year, but as things with my other health conditions got worse, my continued to deteriorate. The meds weren’t working, I was ashamed to talk to anyone about it besides my parents, and because they were uninformed, my parents believed in “mind over matter” and thought meds weren’t necessary.A new psychiatrist, med changes, and additional therapy led to an additional diagnosis and years of more unsuccessful outcomes. When one health condition acted up, all of the others got even worse. Every doctor liked to pass the buck: the depression is because of the #Fibromyalgia, the IBS is because of the , the pelvic floor dysfunction is because of the fibromyalgia, and so on and so forth. I can’t even count how many times I’ve heard the “chicken or the egg?” speech. But regardless, no one was positively affecting anything.At a certain point, I felt like I was swimming upstream. I didn’t feel like fighting anymore and was making plans to take my life.I wish back then I had known someone who’d actually been where I was and gotten to the other side. Fortunately enough, I had my sister. But millions of others suffering today aren’t as fortunate.I was able to find something that worked for me at that point in my life and get me to the other side, Dialectical Behavioral Therapy (DBT).

My point is that the more accepting we are of , the less ashamed we’ll be to talk about it, to seek help for it and to be it.

We are fighters. We are warriors. We are survivors. And that shouldn’t be something to feel ashamed of.

I want to end the stigma of . I want to lessen the power it has today.

Erica Joy

To the Doctors Who Ignored My Symptoms and Let Me Down

I don’t write these letters to you out of spite or anger. I don’t hold a grudge against you and I don’t wish you harm. At one point I was very angry; you let me down and I felt personally betrayed. But I have since grown and learned to appreciate all that I have gained because of these experiences. So without further ado, to the doctors who let me down the most in my life, when I was truly at my worst: To the doctor who told me I needed to lose weight at just 6 years old… I wish you knew the strength of your words as you repeated them year after year. Each visit came with yet another round of disappointment upon hearing that I remained overweight according to the BMI index. As a little girl, I remember it feeling similar to having the wind knocked out of me when getting hit in the stomach by a soccer ball, leaving me at a loss for words. Every time I stepped onto that scale in the corner and watched you slide up the numbers, I prayed you wouldn’t say those words. It is from you that I learned to manage my expectations and brace myself for disappointment. Similar to a tree, I grew roots grounded deep to endure the wind that has threatened to break me upon each setback or disappointment from doctors throughout the years. To the doctor who threatened me with tubes and hospital stays… From you I learned how to be brave. I learned to stand my ground no matter how many times you said you didn’t believe me. Throughout your threats of painful tests and hospital stays, I didn’t falter. I learned to put on a brave face as I endured those awful tests, in the hopes that the results would lead to the proper treatment I needed. And as you were shoving pills down my throat, I learned how to determine when it was time to throw in the towel with a doctor or treatment, which has become something of value over the last 10 years. To the doctor who told me it was in my head… It was your advice that led to some of the most traumatic moments of my life. But it is also because of you that I have gained the most. Because of you, I found the strength to use my voice. I learned that I am my own best advocate and the importance of persistence. Most of all, I developed the ability to trust myself. At the time, my instincts were telling me that something was terribly wrong. I’m not sure if it was due to shame, embarrassment, or fear, but for whatever reason, I chose to believe you and convince myself that it was all in my head. I allowed myself to struggle in ways one should never have to struggle. Once I finally learned that it was not in fact “in my head” and was properly given a diagnosis, I made a choice to never again allow someone to have that kind of control over my body. Since then, I have fought to be heard. I have persevered in ways I never thought possible, and I continue to trust my instincts. But most importantly, I do not give up. Getty Image by AlexRaths

Erica Joy

10 Ways to Be a Better Friend to Someone With Chronic Illness

One of the most painful aspects of my chronic illness has been dealing with loss and grief, especially in losing valued relationships with family and friends. Battling a chronic illness is hard in so many ways. One of the hardest parts for me has been accepting support and letting in those who care about me. I have grown so accustomed to internalizing my emotions and processing new information on my own. Consequently, I end up isolating myself and turning away anyone who tries to help. While I am at fault for many of my lost or faded friendships, there are so many things I wish I could have said that may have led to a different outcome in the relationships. I forget that sometimes my friends and family struggle just as much as I do in not knowing how to help and support me. Here are 10 ways to be a better friend to someone with a chronic illness: 1. Don’t just assume – ask me. You know the saying, when you assume you make an “ass out of you and me”? Don’t assume I’m feeling fine because you think I look great. I know you’re trying to be nice, but it’s called an invisible illness for a reason. I hate having to explain why I may look fine, but I am not feeling any better. Instead, just ask me if I’m feeling better or if there’s anything else on your mind. 2. Be supportive when I decide to open up about my illness. I constantly downplay my struggles because I don’t want to be that person who’s constantly complaining or being selfish. If I’m telling you about my pain, I’m deliberately choosing to be vulnerable with you because I want and need your support. 3. Listen without trying to provide a solution. Sometimes I’m just frustrated and complaining. I’m not looking for you to fix the problem – I just want someone to listen. I’ve more than likely tried or heard the suggestions or advice you have to offer. Listen with an open mind and really hear what I have to say. 4. Be mindful that this is my own chronic illness experience. While you might have a friend/aunt/co-worker who has the same chronic illness, their experience is most likely completely different from mine. Each person experiences his or her disease and treatment in a unique way. While I know you may only be trying to help, try to refrain from drawing comparisons to others you know with similar conditions. 5. Don’t take it personally when I have to cancel plans. Understand that I don’t cancel plans because I want to. It’s because I have to. I want to go, but sometimes I just can’t and I already feel guilty about that. 6. Take the first step to reach out. I feel isolated all the time, so when someone reaches out to me just to catch up, check in, or say hi, it can quite literally make my day. Text me, message me, Snapchat me, tag me – anything to remind me you’re thinking of me and I’m not forgotten. 7. Be mindful of the types of plans we make. My energy levels are just not what they used to be. Keep in mind how draining things can be when making plans. Try to avoid loud restaurants, late nights or a lot of walking. 8. When we’re out together, find ways to help me stay comfortable. Often in large social settings, I get anxious and feel out of place – not everyone knows and understands my limitations. I struggle to verbalize how I truly feel because I get embarrassed. Help me find a place to sit and have a conversation one-on-one with me, or suggest we go to the bar to get a glass of water. 9. Don’t give up on me. One of my greatest fears is being a burden, so I isolate myself and push people away. When I stop hearing from you, it confirms my fears. Keep inviting me to hang out even if I often say no. One day I may say yes. I still want to feel included and be a part of a community. 10. Accept who I am today. Learn to embrace the new me. Don’t have high expectations or compare me to my old life. Accept me for where I am right now, not where you want or need me to be. How do your friends and family support you in your chronic illness journey?

Erica Joy

Types of People You Should Have in Your Chronic Illness Support System

Aside from a team of doctors, specialists and psychologists, the most crucial aspect to surviving any type of illness is a good, unwavering support system. A person with a chronic illness may need a group of individuals with a wide range of characteristics and qualities that you can depend on during your times of need. Here are the six most important faces in my support system: 1. The Shoulder to Cry On They are your shoulder to cry on, even if sometimes that means answering the phone to listen to you cry so you don’t feel all alone. The one that holds your hand during painful procedures and sits in the waiting rooms at every doctor appointment to make sure you know they’re here for you. They’re the person who texts you at least five times a day, so you never feel forgotten. They’re also the one who sleeps with their phone on their pillow, just in case you have a bad night. And because I don’t always show it, here’s a special shout out to my mom for being my number one support person. 2. The Pep Talker The person you turn to when you’re having the “poor me’s” and know it’s time to stop feeling sorry for yourself. Or when you just need a good pep talk and to feel strong and brave. The one who may not always grasp what you’re going through, but they will never stop trying to understand. They’re the person who will be there to lift you up when you feel like you’ve lost the strength to stand on your own. 3. The One With The Best Advice The one who might as well be a mental health professional (or maybe even is) because they give the best advice. They somehow always manage to make you feel less stressed or overwhelmed, every time you talk. They’re the one who really gets you on a different level than everyone else and would never ever judge you. They’re at their best when you’re being true to you. 4. The Second Mom They are there for you in a heartbeat. They sub in when your mom can’t make it to something important, and they are almost as proud and excited as your real mom during your happy moments. 5. The One Who Makes You Smile There’s that person who can always make you smile, even at the worst of times. They seem to always know just the right thing to say or do. They love you unconditionally, despite having truly seen you at your worst. 6. The One You Relate To The person you can relate to because they are either going through something similar or have gone through something similar in the past. They’re the one you can share your most irritating complaints with, or laugh with while swapping war stories. And most importantly, they are the one who makes you feel loved and cherished, and they will always be there for you no matter what. To the many faces in my support system, thank you. You each hold a very special place in my heart.

Erica Joy

I Got Diagnosed but Now I'm Looking for Happiness

A few months ago I had a revelation: A medical diagnosis is not the key to happiness. I’ve spent a significant portion of my life battling chronic illness by searching for answers, seeing new doctors, trying different medications, and receiving new treatments. I’ve received about 20 different diagnoses, and, to no one’s surprise, none have led to my happiness. I’m not quite sure when or how it happened, but, somewhere along the way, I lost track of who I was throughout my medical mystery journey. At some point in the past, there were things that made me happy. I didn’t have quite as many symptoms nor were they as severe. I wasn’t constantly in pain or worrying about where I was going to hurt next. I couldn’t remember what it felt like to be truly happy, but I was confident that I had felt it. My Downfall I got sick slowly at first, only having problems with my stomach. But with what felt like the snap of my fingers, things picked up speed and started spiraling out of control. The more unanswered questions and incorrect diagnoses I received, the sicker I got and the gloomier the outcome looked. Have you ever had that nightmare where you’re buried alive and screaming for help but no one can hear you? Well, I felt like I was being buried so deep, I could no longer see the light to make my way back out. My depression reached a new low. One doctor told me my symptoms were in my head, another was giving me 18 laxatives a day, my therapy sessions felt like a waste of time, and my psychiatrist was at a loss after I’d maxed out on my sixth antidepressant. I couldn’t trust my doctors anymore and I truly felt like giving up. Light at the End of the Tunnel At the beginning of that summer I was put into dialectical behavioral therapy (DBT), which is a cognitive behavioral treatment that helps people learn and use new skills and strategies to develop a life that they experience as worth living. By the end of the summer, I honestly felt like I understood myself a little better than I previously had and I could see a sliver of hope. Fast Forward to Today I won’t lie to you and say that after that summer, everything was uphill and my life was great. There were ups and downs (some significant downs to tell you the truth). But when I take a step back to look at my journey through all of this, I see one major flaw: I let my chronic illness and medical conditions define me. I let them constrict me and squeeze out who I once was as I spun out of control searching for answers. Today, I don’t constantly hope someone will find the missing puzzle piece to my chronic health mystery. I hope to find new ways to cope with the pain. I hope to find doctors who listen. I hope to manage my symptoms as best as possible. I hope to smile. I hope to stay curious about the world around me and be interested in learning new things. I hope to want to get out of bed. I hope to travel the world. I hope to not hate yoga. I hope to spend less time on my couch. I hope to explore NYC. I hope to love photography again. I hope to spend more time with my sister. But mostly, I hold onto the hope that I will always find a way to fight for a life that brings me joy. And I believe that you deserve to find that hope too.