Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Guest Post: 'Jaime's Story.'


Sunset

Hello. I'm Jaime A. Heidel, and I am the founder and CEO of itoldyouiwassick. The chronic illnesses I live with include celiac disease, IBS, chronic urethritis, chronic shoulder pain, PTSD, OCD, and TBI. I am also on the autism spectrum.

Celiac disease is an autoimmune disorder. If I eat gluten, my immune system mistakes my intestines for a foreign invader and attacks. It causes my digestive system great distress. In addition to horrible stomach cramping and diarrhea, I also experience muscle inflammation, brain fog, mood changes, excessive thirst, and dry eyes.

IBS is irritable bowel syndrome. There are other food intolerances including berries, soy, and sucralose (Splenda) that can cause me serious intestinal flare-ups.

Chronic urethritis means my urethra, for no known reason, flares up quite frequently, and it is painful.

The chronic shoulder pain is from a car accident many years ago. I had a herniated disc at the time, and I still experience painful spasms in my right shoulder that start at the base of my neck and move all the way down to beneath my rib cage.

PTSD is post-traumatic stress disorder, which I have had since childhood.

OCD stands for obsessive-compulsive disorder. It is an anxiety disorder characterized by intrusive thoughts and repetitive behaviors.

TBI stands for traumatic brain injury, which I also sustained in childhood.

Autism is a neurodevelopmental condition that affects learning, social interaction, and the processing of sensory information.

Jaime

I can't say there is anything that I specifically loved doing before I was diagnosed because I've always been sick. From birth to the age of 22, I didn't know a day without stomach pain, brain fog, emotional dysregulation, and chronic fatigue, so reading, writing, graphic design, and watching movies is what I loved and still do. Nothing has changed in that respect.

I am thankful that although I cannot work in an office setting as I used to, I am able to work from home as a blogger and social media manager. It gives me great joy to connect with the chronic illness community and help them feel validated, understood, and accepted. I'm grateful that I do not have to work a typical 9-5 job as I am unable to do so with consistency. There are days, sometimes weeks, where I am able to do what I love for hours at a time, then there are polar opposite days and weeks where I can barely function.

I was born sick. I have no frame of reference for what it's like to be healthy. I had severe colic and digestive issues as a baby, sensory processing, learning, and social issues as a child, and emotional dysfunction as a teenager. In my 20s, I was yet to be diagnosed with PTSD, OCD, TBI, or autism. I only knew for sure that I had celiac disease and IBS.

It took me having a complete nervous breakdown in 2014 to finally receive the remainder of my diagnoses and be treated for them accordingly.

Each and every diagnosis I received was an uphill battle. Like many people in the chronic illness community, my symptoms were simply dismissed as being “all in my head”, or, when I was a child, it was assumed that I was “making it up for attention”. Doctors would find the occasional abnormality in my lab tests, but mostly, they came back “normal”, so I eventually gave up on doctors and started doing my own research.

I didn't realize it at the time, but all the research I ended up doing would give birth to my passion in life, which is to write about and help others with chronic illness.

I have a few different types of flares. For example, when my shoulder is acting up, it feels as though somebody is jabbing my trapezius muscle with a metal ball bearing attached to a pole. The pain will then radiate outwards, down the right side of my back, up my neck, and down my right arm.

If I eat something my digestive system is unable to tolerate, I will have terrible lower intestinal cramps, diarrhea, hemorrhoids, and bleeding. That feels like somebody is shoving a hot poker into my colon and twisting it. My stomach also sounds like a cement mixer because of all the gurgling caused by the inflammation and intestinal gas.

If my anxiety is high, I find myself overthinking, being highly emotional, and feeling as though I have to perform my OCD rituals more often. It's incredibly exhausting.

A flare can last anywhere from a few days (in the case of my shoulder) to a few weeks (in the case of my stomach). Flares affect me on a very deep emotional level. Because I am able to keep from having bad flares as a result of my strict diet and supplement regimen, when I do have one that's particularly bad, it can break me down psychologically. I feel like I'm right back at square one before I was ever diagnosed, and the feelings of helplessness bring back PTSD-triggering memories of not being believed and being punished (yelled at, ignored, having privileges taken away, etc.) for “pretending to be sick”.

When I do have an intestinal flare, I cope with it through rest, hydration, dietary changes, and hot Epsom salt baths. I usually drink a lot of bone broth, coconut water, and aloe, and I stick to foods like brown rice and gluten-free bread until I can get my system stabilized.

My main triggers for any type of flare are foods I'm intolerant to, stress, weather changes, sleeping in the wrong position, moving the wrong way, exercising the wrong way (in the case of my shoulder), pushing myself too hard, sensory overload, and emotional turmoil.

I take medications for my mental health conditions, but I'd rather keep the names of those to myself. As far as supplements, I take magnesium at bedtime because it's very calming and helps with sleep. I also take vitamin D3 as I have a tendency toward a deficiency. I'm also taking probiotics and digestive enzymes to help keep my digestive system running as smoothly as possible.

My biggest tip for anyone who suffers from an intestinal illness is to cut out highly-processed foods, gluten, refined sugar, artificial sweeteners, artificial flavorings, synthetic dyes, and MSG from your diet. They are making your condition 10 times worse.

For someone who has similar mental health issues, I can't recommend DBT (dialectical behavior therapy) enough. It helps retrain your brain and gives you real tools that you can implement into your everyday life. It's helped me in ways I never could have imagined.

My chronic illnesses have impacted my life in every single way imaginable. I was going to college for a long time before I understood that my brain worked differently from those around me, and I ended up having to drop out because I just couldn't pick up on the material no matter how hard I tried. My inability to remember and process certain information has caused difficulties in jobs, friendships, and relationships.

The most positive impact chronic illness has had on my life is that I get to take everything I've researched and learned and share it with others.

My illnesses have stopped me from doing a lot. I mean, a LOT. For example, my anxiety is very high, and I have a poor sense of direction and spatial relations, so driving on the highway and going out places can be very challenging for me. It's kept me isolated and definitely stunted my social and emotional growth. However, since I'm autistic, I don't mind being isolated, so it kind of balances out in that way. I was, essentially, built for the life I live now.

I stay positive by appreciating the little things in life and also by knowing that when I tell my stories, I'm helping others who've gone through similar experiences understand that they are not alone. Also, I have a chance to use my experiences to shave off 5 to 10 steps in the diagnosis and/or treatment process for someone else trying to find answers, and that makes me very happy.

My hope for the future is that I will continue to be able to do what I'm doing. It's what I love, and it gives me purpose and hope. Other than that, I just like to take it one day at a time.

- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -

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