When My Autism Kept Me From Communicating Pain From Interstitial Cystitis


It was the beginning of August, I was enjoying the summer fun — until my stomach hurt to the point I was crying, whining, upset, agitated and melting down. I was hurting, but I didn’t have all of the words to describe it to people. I just knew that it hurt and that it was somewhere in my stomach area. I knew it hurt. I knew I was frustrated. I knew I wanted to feel better. But I didn’t know what hurt or why.

I often have a hard time describing, expressing and communicating pain, even though I am verbal, this is due to my autism. Pain is such an abstract concept. We often hear the phrase, “Behavior is communication.” This phrase is so important. Please, please consider medical or health issues being a possibility when seeing an individual experience behavior that seems unusual for them, out of sorts, or increases for no apparent reason.

I am so very grateful for my parents, family, therapists and friends being there for me and helping me cope and advocating with me. Thank you to every single one of them for all they did and continue to do. Support is important, and parents and caregivers need and deserve support just like the individual does.

woman in glasses smiling at the camera
Chloe.

Please trust your gut. Continue advocating to find an answer. Help the individual to be comfortable and know that you understand they hurt and are trying to figure it out. Seeing numerous doctors and working really hard to communicate and find a way to explain the hurt to others in a way that is understandable is not an easy feat — at least it wasn’t for me. I got frustrated when answers didn’t come after each doctor’s appointment and the pain was still there.

We found out what it was not, time and time again. I became pretty experienced and good at doctor’s appointments, tests, etc. But I still didn’t have an answer.

Then we finally found an answer. I was diagnosed with interstitial cystitis (IC). My bladder was hurting; the bladder and pelvic area is very close to my stomach. IC cannot be detected in the urine, hence why urine samples and various tests did not show answers. Hence why I said, “Hurt” and pointed to my stomach area. It was assumed it was gastrointestinal at first because everything else was normal. Then at a routinely scheduled appointment, a specialist asked if we’d heard of IC. We hadn’t. That was the first time we really began to think about it being bladder pain. In the end it makes sense, with the bladder so close to the stomach area. In my concrete mind, it was my stomach, and it just hurt. But detective work discovered it was more.

Please, please, please — listen to behaviors, listen to the words of others, listen to your gut feeling. Advocate for what you think and what you think is best for the individual. Remember even on the hard days, the individual needs you. You can be one of their biggest advocates. Believe the pain is real even if you can’t see it. Be patient, be understanding, be supportive. Most importantly just be there. Be willing to think out of the box. The adventure and journey may not always be easy, but I definitely learn and make progress.
Accept that sometimes behavior is simply the best and very possibly only form of communication we may have amidst all the hurt and frustration. Accept that individuals with autism are different, not less. Be aware how much one can learn by doing, living and experiencing. I ask that you do this not just in April, but year-round.

Remember, I may have autism and I have IC, but these struggles don’t totally define me or who I am. They are just a part of me. Step back and see all the many characteristics one has to offer.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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