Shining The Spotlight on Chronic Illness & Disability Q&A With Jaime
January 20, 2019
Hello and welcome to another instalment of Shining The Spotlight series. Todays q&a is brought. to you by Jaime of I Told You I Was Sick
Introduce yourself and tell us a bit about you?
Hello. I’m Jaime. I’m an autistic woman who received a late diagnosis of this developmental condition in 2015. I’m a content creator who specializes in making content around chronic illness, natural treatments, and life on the autism spectrum.
Chronic illness(es)/disabilities I have?
I’m autistic, but I don’t consider it a disability, although it does cause a fair amount of issues living in a neurotypical (non-autistic) world. Like many on the autism spectrum, I see it as a different operating system, like the difference between a PC and a Mac.
I also live with OCD, PTSD, celiac disease, chronic allergies and sinus problems, diverticulosis, and joint hypermobility.
My symptoms/condition began?
My symptoms began at birth. I don’t know what it’s like to feel 100 percent healthy, and for that, I am actually grateful. I don’t know what I’m missing. The digestive problems began instantly. According to my mother, I was very colicky. My anxiety symptoms showed up when I was a toddler, but I didn’t start performing OCD rituals until I was 10.
My diagnosis process was?
My diagnosis process was a long and painful one. As I mentioned, I was born sick, and my family took me to doctor after doctor, but they couldn’t find anything wrong with me.
Eventually, I was seen as an attention-seeking child and treated accordingly.
I was diagnosed with celiac disease after two months of horrible stomach problems, sudden weight loss, and incredible fatigue. I practically had to crawl into a naturopathic physician’s office in 2002, and, he took one look at me and said, “Food is killing you”.
I was put on an elimination diet, and, for the first time in my life, I felt no pain in my stomach, and I remember that being very strange for me, like I was missing something, but I couldn’t quite put my finger on it.
Later, when I reintroduced foods, I found out I reacted badly to wheat, gluten, corn, and table sugar.
I figured out I was on the autism spectrum in 2007, but, unfortunately, I would not receive an official diagnosis until after having a complete nervous breakdown in 2014. This is also when I was officially diagnosed with OCD and PTSD.
The diverticulosis and joint hypermobility were both just diagnosed a few months ago.
The hardest part of living with my illness/disabilities is?
I think the hardest part of living with my illnesses and disabilities are how they affect my energy levels and ability to do certain things. I also have short-term memory loss and difficulty understanding verbal and written instructions, so it can be very frustrating. Many activities are just off-limits for me. Not because I’m not interested in them, but because I literally cannot perform them.
People assume that?
People assume, despite my many official diagnoses, that I’m either exaggerating or flat-out making them up. This isn’t as big a problem as it used to be, but when I was a child and young adult, it was very emotionally painful to be thought of in this way.
Being ill/disabled has taught me?
Having a multitude of chronic conditions has taught me that the human spirit is unbelievably resilient. Human beings are also very adaptable. If one part of the brain or body doesn’t work properly or has issues, something else rises to the challenge to compensate. It’s actually pretty remarkable!
What advice would I give someone recently diagnosed?
It’s hard to say. Part of me would want to say, “Congratulations” because not having a diagnosis is so much worse. Knowing that you’re sick, but not being able to figure out what’s wrong (and not being believed) can be incredibly frustrating and painful.
For those who were once healthy and have recently become sick, I would suggest taking time to grieve for the person you once were. I would also suggest keeping a journal to vent your feelings.
Another important thing to do is learn how to pace yourself. When you’re a spoonie, energy can be in short supply, and it can be difficult to recover after using too much of it at once.
My support system is?
My support system is a few close friends, a few close family members, and my faith.
If I had one day symptom/disability-free I would?
Just one day?? LOL! If I had a week or more, I’d travel.
One positive of having a chronic illness/disability is?
One positive of living with chronic illness is learning how to appreciate the little things in life. Seeing every good moment, every good day, as a miracle.
The spoonie/disability community has been?
The spoonie community has been incredible! The amount of support has been truly amazing, especially on Instagram.
I’m also quite grateful to be a part of serving the community through my website, www.itoldyouiwassick.com.
Thank you to Jamie for taking part and sharing your story.
If you’ve missed any of the previous posts you can find them here. Also if you would like to share your own story of chronic illness or disability you can email me firstname.lastname@example.org, I will be happy to send you the questions and answer any queries you may have.