When I first started eating disorder treatment in 2008, I had an idea of what it would be like: I would go see a therapist for a month or so, they would tell me what was wrong with me, instruct me on how to fix it, and I would magically stop using eating disorder symptoms. I expected I would be done with treatment in a month or two.
Of course, that was not the case. In reality, eating disorder treatment is arduous, often lengthy, and full of ups and downs. In addition to seeing a therapist to work on mental health issues, an important part of treatment is mending your physical health. When I look back, I wish I would have known what to expect physically during that time. While there are more resources now than there was when I entered treatment in 2008, there is still a lack of information about ED-DMT1 (eating disorder and diabetes metillus type 1) and how it differs from other eating disorders. Many of the individuals I speak with who struggle with diabetes and an eating disorder have shared their distress when reintroducing insulin into their bodies, and how they wish they’d have known that some of the changes they experienced were to be expected.
Here are some common issues that people in treatment with ED-DMT1 encounter:
1. Insulin edema
Perhaps one of the most difficult initial hurdles to overcome when in treatment with ED-DMT1 is insulin edema or water retention. Water usually collects in the lower extremities and sometimes your midsection. Due to the constant state of dehydration due to high blood sugars, the body may want to hold on to as much water as possible.Additionally, the extra water is needed to aid in cell repair and to regulate liver and kidney function. Edema may be uncomfortable and even be painful at times. If you are experiencing edema, there are some steps you can take to combat its effects: elevating your feet, wear compression socks, and, though it may sound counterproductive, drink plenty of water. Your doctor may also prescribe medication if the swelling is severe. Most importantly, continue with your insulin regime and meal plan.
Before I sought professional help, I would occasionally make an attempt to take insulin regularly. However, the edema I experienced was highly distressing and I would engage in eating disordered symptoms again in order to get rid of the excess water. Though symptom use is tempting in order to alleviatethe edema, doing so will only prolong the process of getting your body back to normal. After being in recovery for several years, I no longer have edema. The water weight that I initially put on dissipated. Remember, insulin edema is temporary.
2. Gastrointestinal distress
Reintroducing insulin is also associated with gastrointestinal problems. It is common for ED-DMT1 patients to experience a variety of gastric issues, including bloating, constipation, and diarrhea. Without a sufficient amount of insulin in the body, the digestive system is unable to move food through, and this is why these symptoms happen. Gastroparesis is another gastric issue that can arise. Gastroparesis is a diabetes complication that occurs when the nerves that control the emptying of the stomach into the intestines get damaged. The result is that food stays in your stomach for an extended period of time, which often results in gastrointestinal problems.
Even with gastroparesis, there are medications and tweaks to one’s diet to reduce these symptoms. Be sure to talk to your doctor or dietitian to discuss these options. With time, insulin, and nutrition, and perhaps some medication, these symptoms do get better!
3. “Symptomatic Relative Hypoglycemia”
Our bodies are incredible at adapting to various environments and states of being (WC). When a person regularly omits insulin, their body becomes accustomed to high blood sugars. Thus, the state of hyperglycemia feels “normal.” When a person begins to administer insulin on a regular basis, it takes the body some time to get used to in-range blood sugars. It’s quite common for ED-DMT1 patients to feel low when their blood sugar is in their target range. Doctors and clinicians refer to this as symptomatic relative hypoglycemia (Critchley, 2014). Feeling like one is hypoglycemic is extremely uncomfortable and may deter a person from continuing to carefully monitor their blood sugars and take insulin. Providers have found that slowly lowering a patient’s blood sugars is most effective, especially if the patient is used to being severely hyperglycemic on a regular basis (Critchley, 2014).
4. An increase in symptoms of diabetes complications
As most people with diabetes are aware, diabetes can wreak havoc on your entire body and cause a myriad of complications. When in treatment for ED-DMT1, it is not uncommon to find that, if you have developed complications, they tend to get worse before they get better. Complications do get better with consistent blood sugar management and nutrition. I’ve dealt with several complications, including peripheral neuropathy, retinopathy, and gastroparesis. I’ve been on various medications and undergone several procedures to combat these complications. Now, my eyes are stable, I no longer need medication to combat the nerve pain in my feet, and my gastroparesis only causes flare-ups ever now and again. Our bodies have an amazing ability to heal.
I know firsthand how frustrating and uncomfortable it is to sit through these changes and allow your body to normalize and abstain from eating disorder symptoms. It can feel like your body will never get back to normal. I can assure you that, with time and consistent insulin injections and nutrition, your body will normalize. Eating disorder treatment has many ups and downs, and it’s ok for feel frustrated, angry, or sad about these changes. It is crucial to surround yourself with a supportive treatment team and loved ones. This time of fluctuation and change can be extremely difficult to handle by oneself.
Keep in mind that there is always hope. I often felt so hopeless at times I didn’t think I could go on. Somehow, I found that shred of hope necessary to keep going. I encourage you to find that for yourself.
If you need extra support or resources about ED-DMT1, do not hesitate to contact We Are Diabetes.
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Note: These changes may or may not happen during your recovery process. Due to the serious complications that diabetes can cause, it is extremely important to be monitored by a medical doctor. This blog post is only meant to inform the reader of the potential issues that may arise while in recovery from ED-DMT1, and is not meant to replace the advice of your doctor.
Critchley, S., Meier, M., & Taylor, D. (2014, March 1). Eating Disorders and Type 1 Diabetes: Practical Approaches to Treatment. Practical Diabetology, 18-24.
Parkin, C. Inpatient Management of Eating Disorders in Type 1 Diabetes. Diabetes Spectrum, 22, 153- 158.
Parkin, C. Outpatient Management of Eating Disorders in Type 1 Diabetes. Diabetes Spectrum, 22, 147-152.