“It’s all in your head.” “You’re just acting like this for attention.” “Nobody is that dense.” “The doctors can’t find anything wrong with you!” “Your stomach doesn’t hurt. Stop pretending!”
These words and many more like them continue to buzz around in my head today, despite the fact that I’ve had valid diagnoses of chronic illness since 2002.
Words and scenarios playing on a loop in one’s head is a common symptom of post-traumatic stress disorder (PTSD). I have PTSD due to a combination of childhood trauma, childhood sickness, and the people around me not only not believing me, but punishing me for “faking” my sickness.
Like many who have lived with a chronic illness, whether mental, physical, or both, since childhood, I was denied love, positive attention, comfort, and certain privileges because the adults around me mistakenly believed that if they denied me these things, I would “stop pretending” and act like a normal child.
Well, it backfired. In addition to struggling with chronic sinus problems (to the point where I had to breathe through my mouth most of my childhood), gut-wrenching stomach pain and diarrhea, and chronic, unexplained itching throughout my body, I am also autistic.
Therefore, not only was the attempt to “correct” my behavior, keeping me from getting my basic needs met, I had no understanding of the subtext, so the behavior of the adults around me only served to confuse and frighten me, not teach me.
For most of my life, I thought human beings, by and large, were cruel and unpredictable individuals who flew off the handle at random times and were not to be trusted.
First Came the Choir of Angels
When a naturopathic physician took one look at me and said, “Food is killing you”, it was the first step toward my official diagnosis of celiac disease. This explained everything. The horrible stomach cramping, relentless diarrhea, the mood swings, the brain fog, the muscle pain, my hair falling out, the dry mouth, the itching. Everything.
When I found out, it was as though a light had descended upon me, and a choir of angels broke into song. I couldn’t wait to tell every single person who’d refused to believe me that I actually had a disease. They would understand! They would apologize! Things would be OK!
Well, guess what? It wasn’t that easy. I received my diagnosis in 2002, and, back then, hardly anybody even knew what the word ‘gluten’ meant or how “food could possibly make someone so sick”!
My family assumed that I had found the disease on the Internet and was now following a gluten-free diet because I had somehow gotten it into my head that I had celiac disease.
That shut the choir of angels up fast.
Next Came the Hurt
It didn’t matter how much independent research I had done, how many doctors I’d been to, or the fact that I also had ITP, a blood-clotting autoimmune disorder that has been linked to celiac disease.
Even the verifiable medical evidence didn’t matter. I was simply thought of as an attention-seeking young woman who found diseases on the Internet and pretended to have them.
In the eyes of my family, that is how I remained into adulthood.
Until, that is, I had a nervous breakdown.
Back in 2014, after enduring months of my slowly-unraveling emotional health largely on my own, I checked myself into the hospital.
This next part is very hard for me to write because I’ve never actually written about in a public forum before. Not in this type of detail, anyway, but here goes.
I will never, ever forget the day a certain family member, who was especially averse to believing that anything was wrong with me, walked into the ER and saw me—like, actually saw me—and cried.
I was sitting in a hospital gown, hugging my knees to my chest, my body thin as a rail, and my forehead, arms, and legs covered in scabs from a horrendous battle with dermatillomania (skin-picking disorder).
This family member sat down on my bed, and I clung to them like a child. All I remember saying was, “I’m so scared. I’m so scared. I’m so scared.”
Every emotional and physical trauma I had ever endured in my life was clawing its way out of me, and the only thing I could do was let it.
I was admitted. I was diagnosed with OCD, anxiety, and major depression. I was medicated. I was given outpatient resources. When I left the hospital, I had to take things one moment at a time.
In 2015, I was FINALLY diagnosed with Asperger’s syndrome after years of knowing I was on the spectrum but not being able to get anyone to believe me. I was also diagnosed with PTSD.
Next Came the Rage
Celiac disease. ITP. Chronic neck spasms from a car accident and a herniated disc. Chronic allergies. IBS. OCD. PTSD. TBI (traumatic brain injury). Autism. Yes. All of this is a part of who I am, and now, all of it, every single solitary bit of it is diagnosed and backed up by medical professionals.
The gratitude I feel at having these diagnoses goes beyond anything I could ever describe in words. I’m happier and healthier now than I have ever been because I acknowledge my conditions, those around me acknowledge them, I understand what I am and am not capable of. I also have all the support I could possibly need or want.
But…why did it have to take a nervous breakdown for that to happen? Why couldn’t the people around me see the signs of obvious distress and know something had to be wrong? Had to be.
- Easy bruising and bleeding
- Frequent colds and ear infections
- Chronic sinus problems
- Extreme fatigue
- Mood swings
- Chronic diarrhea
- Learning disabilities
- Emotional instability
- Sensory overload
- Social confusion
- Easy startle reflex
The list could go on, but that’s not what’s important. I just can’t, even in my adult mind, fathom that someone my age could look at a child with these symptoms and truly and honestly believe that said child was even capable of making all that up!
That’s where the resentment comes in. People believe me now. It’s like a switch went off, and the night-and-day difference is sometimes still too shocking to process.
A doctor and a therapist diagnosed me so…I must be telling the truth, right? I must have always been telling the truth.
So, where the f*ck were you all this time?!?!?! How am I any different now than I was before my brutally obvious symptoms were confirmed by medical professionals? WHERE WERE YOU?
“I am in the wilderness alone.” – Sophie B. Hawkins
Next Came Acceptance
What have I learned from all this? That I am strong and resilient, and that I do not give up easily. (An Aspie trait I especially love.) That I do have loving family members and friends who support me now. That I am capable of enduring incredible pain, coming out on top, and helping others find peace in their world, even in the face of chronic illness.
It took time. It’s still taking time. But, I left that hospital, slowly made my way back into the light, and wrote a book about how to put your chronic illness into remission. That’s been my one of my greatest accomplishments to date!
Do I hate the people who didn’t believe me? No. But, resentment is part of the mixed bag of emotions I still carry around with me, and you know what? It’s OK. It’s understandable. It’s normal. It’s even healthy. I acknowledge it completely, and, in so doing, can hope to one day move on from it.
So, if you’re feeling angry, hurt, and resentful because your needs weren’t met or you weren’t believed until you had a doctor’s diagnosis, you are not alone, and what you’re feeling is perfectly valid and OK.
Then Came Wisdom
The best advice I can give you on dealing with your feelings in and around chronic illness is writing about it. Write it in a notebook that nobody but you will see. Type it up in an anonymous online journal. Share it in a private support group.
Whatever it takes to acknowledge the pain and allow it to leave your system. Do this for yourself. Do this for the family and friends who accept and understand you now. Do this for your own peace of mind.
Because, like a chronic illness, resentment can fester inside you and lead to even more physical and emotional health problems down the line.
Also, here’s a secret that may help ease the sting a bit: The people who didn’t believe you all this time, they feel like jerks. It’s just that they have no idea how to even begin to apologize for it.
(I mean, really, where would you start?)
Remember, you are free now, and you are validated. Try not to let your own self-doubt about your chronic illness creep up and get in the way (it still happens to me sometimes, too).
You are in this world for a purpose. Once you dig down into yourself where some of your deepest pain is buried, you will find a treasure you didn’t think you still possessed—the innocent light that came into this world to be a positive force for change.
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