Why I'm Sharing the Burden of My Chronic Illnesses With the World


I don’t like feeling vulnerable and I’m not good at opening up. I firmly believe my problems are my own responsibility. But I have learned this past year there are some things that are too big to handle by myself. So, world, I am sharing my burden with you. My name is Sarah, and I am chronically ill.

I have three chronic conditions – Hashimoto’s hypothyroiditis (an autoimmune disease that attacks and destroys the thyroid), gastroparesis (delayed emptying of the stomach) and dysautonomia (a condition where the parasympathetic and sympathetic nervous systems don’t know how to communicate properly). All three conditions are incurable and all three have limited treatment options. All three conditions have had drastic impacts on my life.

Because of Hashimoto’s, my energy levels are almost nil. I need to nap in order to make it through the day. Gastroparesis caused me to lose 40 percent of my body weight in seven months…because I could not keep anything down, I was vomiting upwards of 20 times a day. It got to the point where I was scheduled for a surgery to place a feeding tube directly into my intestines. Thankfully, we found a medication that works, but has caused a tremendous amount of weight gain in a short period of time. Dysautonomia means almost passing out every time I get up and sometimes needing to use a wheelchair to get around. I have had to delay my life by a year just to try and manage these conditions.

 

To my friends, I am sorry. I pushed you away instead of letting you in. I was so afraid you would leave me, so I left first. Most of you don’t know how sick I got and that’s on me. I hope we can eventually get back to the friendship we once shared.

To my family, thank you for pushing back, for letting me cry on your shoulder, for supporting me, for celebrating my victories and catching me when I fell. I know how much you worried and how much you care. I literally wouldn’t be here if it wasn’t for you.

I was diagnosed with three chronic conditions before the age of 23. While this isn’t fair, it’s life. And what I’ve learned so far on my journey is that life is much more enjoyable when shared – even the difficult parts. So, world, thank you for letting me share. A burden becomes less of a burden when shouldered by more than one.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via blyjak.

TOPICS
JOIN THE CONVERSATION

Related to Chronic Illness

watercolor painting of woman with orange hair

Why I Dread the 'Good' Days With Chronic Illness

Since becoming ill in 2015, there have been “good” days. Make no mistake – not a day has gone by since that fateful August that I’ve had even a significant fraction of the health and abilities I had prior to FQAD (fluoroquinolone-associated disability) – but there have been days when the nausea has subsided, and [...]
A ladder leading to the clouds on a blue background.

When the Endpoint of My Illness Continues to Move Away From Me

As a small child, I had a simplistic view of what it meant to “grow up.” It wasn’t necessarily that I would have the highest paying job, or own a herd of dogs (though that was definitely a priority). The thing I always wished for was that I could “grow out” of my health problems. [...]
Pain Scale Chart

When a Medical Resident Questioned How I Rated My Pain Level

I recently began seeking treatment at a teaching hospital which has its pros and cons. Some of the pros are that there are a lot of diagnoses and treatment being thrown out, giving the patient a better opportunity to get what they need. The cons, however, is that although you continue to see your doctor, [...]
Speech bubble being held in front of blue background.

When Self-Care Means Saying 'No'

I’ve been thinking about this since the beginning of the month – what is the most important piece of self-care that I practice? A lot of things went through my head. Some were downright practical, such as always taking my medications. Others I enjoy: I paint my nails when I’ve had a busy day, as [...]