How to Survive a Health Crisis with Your Spirit Intact: Part I


Editor’s Note: We Are Diabetes is a nonprofit dedicated to helping those with type 1 diabetes and an eating disorder recover.

Living with multiple autoimmune conditions as well as complications from my decade long struggle with ED-DMT1 (diabulimia) has set a different standard of what “normal” or “functional” health means for my life. At age 5, I was diagnosed with type 1 diabetes (T1D), at age 9 I was diagnosed with Hashimotos, then at 16  polycystic ovary syndrome (PCOS), and in my early 20s, I was diagnosed with attention deficit hyperactivity disorder (ADHD) (the symptoms had been present my entire life but I resisted accepting this) and multiple food sensitivities.

After inpatient treatment for my eating disorder, I took responsibility for my health conditions and the complications that came along with them. For the most part I’ve learned how to manage the worst of the symptoms of my long term complications, which include gastro issues (but not quite a full diagnosis of gastroparesis) and myofascial pain syndrome.

My “normal” or “feeling pretty good” still included the daily ups and downs of having total responsibility for keeping myself alive by being my own body’s pancreas and glucose restoration system, as well as the continual management of my Hashimotos disease (which means I can bounce from hypothyroid to hyperthyroid fairly easily if I don’t keep a close eye of my symptoms) and daily pain management for the trigger points that settle deep into various areas of my body due to my myofascial pain syndrome.

To a person who doesn’t live with multiple autoimmune conditions, I know the description I offer of what equates as “good health” sounds like hell, and it would be hard to imagine calling this “normal.” However, many of my T1D pals are probably nodding their heads as they read this, because it’s rare to only be “blessed” with one autoimmune condition through a person’s life. They tend to cluster. One shows up and gets a little lonely, so he invites a few friends and it’s a party.

For the past seven years I’ve lived with this version of “normal.” I rolled with the punches and learned how to adjust my life and self-care routine whenever my body protested. Even with the chronic conditions I live with, I was doing Bikram yoga three to five days a week, my cardio strength was fantastic and I had the stamina of a horse. Then something changed. It was literally like a light switch was flipped off and overnight my body fell apart.

Up until this point my PCOS had been managed quite well (due to the fact that I’d persisted with my OBGYN to go on continuous birth control a few years ago). After only a few months of not having one of my god-awful, pain—wrenching, panic-attack inducing menstrual cycles, my A1c was finally under 7, I felt strong and my hormones were stable. Unfortunately, after some poor guidance from this very same OBGYN my entire life turned upside down rapidly.

In the early fall of 2015, I was advised by my OBGYN to stop taking my continuous low-dose birth control for four days to “give my body a break” from the hormones. I remember being very unsettled at this idea. I felt stable, healthy and my personal experience with every menstrual cycle that I’ve ever had has been a nightmare of pain and erratic blood glucose levels (BGLs). I questioned the decision a few times but she was firm with her instructions, so I very regretfully followed her advice. She told me that I “probably won’t even have a period, maybe just some light spotting” since my body had been on the continuous hormones for so long.

After four days of excruciating pain and substantial blood loss, I thanked the heavens that I could go back on my continuous hormones. I assumed the massive bleeding and pain would stop soon once the hormones got into my system.

It didn’t.

After three nonstop weeks of these problems, I started experiencing the vasovagal response on a daily basis. My poor body was working way too hard to function, and the amount of blood I was losing everyday (and painful cramping that came with it) was wreaking havoc on my blood pressure and nervous system. Through this first month of hell I was contacting my OBGYN quite often to express my concern at how rapidly my health had declined and how I was literally unable to stand for long periods of time without feeling faint. Surprisingly, she completely dismissed my concerns and told me the bleeding would stop soon.

It didn’t.

I had to stop going to my beloved yoga classes, I had to stop moving in general. I was short of breath from walking up the stairs in our home (which I used to run up two at a time). I became a zombie. After three months of this continuing I was scared. I saw my OBGYN and was upset at the lack of concern or interest she had at my experience. She said that sometimes this “just happens” and that we would up the dose of hormones I was taking continuously and that should solve the problem.

It didn’t.

After another two months of bleeding heavily every day (I had probably missed about 20 days of work at this point due to my BGLs being so erratic and my inability to sit up and create cognitive thoughts) I returned to my OBGYN and pleaded for her to take further action. I had hopes that at this point she would be open to discussing more permanent options with me (which I’d been asking about for years) but instead she gave me a massive Depo-Provera shot (a birth control injection that lasts three months in the body), told me to continue taking the double dose hormones I’d recently switched to (which made me feel AWFUL) and said that this would make it all better.

It didn’t.

I continued to bleed. Every day. For over eight months.

At this point I realized my OBGYN (whom I’d been seeing for over seven years) was not going to be able to help me any longer. Her recent decisions regarding my health had been more harmful than helpful and I needed to find someone with more experience in autoimmune conditions and hormone imbalance issues. I experienced a tremendous amount of side effects (including pounding heart rate, hot flashes, Raynaud’s syndrome, debilitating fatigue, chronic constipation, erratic mood swings and suicidal thoughts) from having so many powerful hormones in my body at once. My Hashimoto’s suffered, my diabetes management suffered, my marriage and my general quality of life deeply suffered.

I started to forget what my sense of “normal” health was.

Read How to Survive a Health Crisis with Your Spirit Intact: Part II by Asha Brown.

WRITTEN BY Asha Brown, POSTED 09/02/16, UPDATED 10/01/22

Asha is the founder and executive director of We Are Diabetes (WAD), where she works with families, patients and health professionals across the USA. She uses her personal experiences with ED-DMT1 to offer hope and support to those still struggling. She also establishes relationships with eating disorder facilities and diabetes organizations across the county to help connect people to appropriate care. Asha has presented at NEDA, AADE and JDRF, among others. She writes for Diabetes Health, Diabetes Daily, Glu, Insulin Nation, dlife, DiabetesMine and other websites. She was a member of the ADA Woman and Diabetes Subcommittee and is a member of Diabetes Advocates and BEDA.