Center on Psychiatric Disability and Co-Occurring Medical Conditions

Back to Podcast page

Transcript for Podcast: Putting a Wellness Framework to Work in My Own Life: One Person's Journey to Health

[Featured Speaker]: Hi my name is Joni Weidenaar. Have you ever been frustrated or overwhelmed when trying to take care of yourself, especially if you have a medical condition? I know have. Since being diagnosed with a condition called “reactive hypoglycemia,” I’ve been frustrated and confused about how to manage my condition. Sometimes I get so frustrated that I don’t take good care of myself. I give up. But then, I feel worse and I end up even more frustrated.

If that cycle sounds familiar to you, I want to talk with you today about a Wellness Framework for managing a long-term medical condition. As much as I wish there were, there’s no magic pill or approach that will fix me, or anyone else. I know the best way to manage my illness is to consistently take care of myself. But, it’s been hard to learn exactly what that means for me, and how to put it to work in my own life. So, I want to share my own story for how I created a framework to stay healthy and enjoy every day.

First, I needed to understand my “whole health.” By that, I mean the three areas that determine our overall wellness: our physical health, our mental or emotional health, and our social health. Assessing each of these areas can help us, our providers, and researchers determine which factors are impeding our wellness, and which ones will best support our treatment, recovery, and ability to maintain wellness. If you and your care providers are focusing only on 1 or 2 areas of your health, you may not be having the best experience you could be.

For example, reactive hypoglycemia is a blood sugar disorder. My blood sugar drops very quickly if I have not had enough of the right foods to eat. So, even if I am not hungry, I have to eat so that my vision doesn’t go blurry or my hands start shaking. Reactive hypoglycemia also can make it very difficult for me to pay attention or to sleep, and it often causes me feelings of nervousness. When this happens, I can have a hard time focusing in school or at work, and I can struggle within my relationships. This shows how something going on with my blood can also affect my emotions and my social sphere.

Secondly in the wellness framework, I needed to understand that my relationship with my doctor is two-way. While doctors are experts on medical approaches, I am the expert on myself. This became especially clear to me when I began to see that the research on my condition can be confusing and at times contradictory. Some doctors believe my diagnosis exists, while other doctors doubt it and make me feel stupid for believing I have this disorder. I get confused on what to believe, and that makes me feel anxious about how to take care of myself. I don’t want to feel stupid. I want people to believe me when I start shaking that I have a very real health problem.

In fact, reading research and following directions in general has been confusing for me. Sometimes, the findings contradict each other. I remember one time I visited my doctor and she told me it was most important to take my pills at the right time and to try using soy instead of dairy to avoid lactose, which is the sugar in milk. At my next visit, she told me to focus on eating small and frequent meals, choose healthy food consistently, and not to eat too much soy because it might be linked to cancer and my family has a history of cancer. I was so frustrated! Based on our last visit, I had found a certain brand of soy milk I liked and my mom had just bought me a gallon of it. I felt like giving up on this whole health thing! Plus, I felt like the experts were being inconclusive and giving me the run-around. Maybe you have felt this way. I think being in situations like this make it very difficult to define good health. If the experts don’t agree, then who can we go to for advice and treatment?

But then, I began to understand that doctors don’t know everything about us. We have to work closely with them to learn what works and how to best manage a health condition. What works for one person may not work for another. This is especially true of reactive hypoglycemia, which is a new diagnosis with only a few studies about living with and treating it. This means my doctor and I are learning together how I can best manage my condition. This also means that I’ve had to do some research of my own.

I have found a couple of blogs -- or discussions on the web -- from people who have been diagnosed with reactive hypoglycemia. These blogs have helped me feel better about my diagnosis and I’ve used them to get tips for self-care that might work for me. But blogs are not always the best source of expert medical advice. They just give me other people’s opinions and perspectives. So, besides blogs, I did online research using credible web sites like WebMD and the American Diabetes Association. I also read books and magazines to help me understand my options.

But guess what? These web sites and resources did not always agree with one another either! However, they did seem to concur on the basic ways I can keep myself healthy while living with a blood sugar disorder. For example, all agree that I need to eat small and frequent meals, exercise consistently, and get enough sleep. So, I tried these suggestions and kept track of what worked for me. I learned what foods to eat and when. I learned that if I don’t exercise, I won’t sleep well. I learned that when I don’t sleep well, I get crabby and do not enjoy life as much as I could. I learned that when I’m not enjoying life, I don’t work or play as well as I could. I learned that it can take time to figure out which treatments and approaches work best for me, but that it was worth the effort.

Related to this, the third aspect of my wellness framework was learning - often the hard way! - that changing daily habits to manage my condition is very difficult. Indeed, during one of my visits with my doctor, she told me that hypoglycemia was first found as a symptom of diabetes, and there has been a lot of research on diabetes. So, we can use some of what we know about hypoglycemia in people with diabetes to help me understand how to take care of myself. My doctor told me, like people with diabetes, if I eat every 2-3 hours and eat small meals, fluctuations in my blood sugar would not happen as easily and I wouldn’t feel as dizzy and anxious.

I was so excited when I left her office because it sounded so easy! I was so wrong. It has been really hard learning to eat in a new way. For over 20 years, I ate 3 big meals every day. But now, I try to eat 3 small meals a day, with 1 to 2 healthy snacks. When I actually manage to eat this way, I feel really good. Changing my lifestyle has been up to me, and makes me the expert on my daily health. My doctor can’t know everything about me, but she gave me a place to start in understanding my illness and standards for self-care.

I don’t feel great every day, but nobody does. We all have fickle bodies that react to a lot of different things from stress caused by our lives to the air that we breathe. I can only take it one day at a time. And, I can live every day to the fullest if I try.

Let’s put what we’ve learned about a wellness framework in order:

1. First, learn about your illness from credible resources like your doctor, books, and the Internet
1. Ask your doctors or other experts to help you find credible resources.
2. Be sure to ask your doctor very specific questions, like how to understand if a medication is causing complications. Your doctor is a human, too. They are learning just like you what works best for you and your treatment plan.
3. If your doctor is unwilling to help you, then find a new doctor. One that is willing to learn with you how to best treat you.
2. Second, dedicate yourself to trying out what is supposed to help. You get to be the researcher on what works best for you!
1. But, only try one new approach at a time, so you can pinpoint whether it is the strategy that’s helping you.

1. For example, the most important thing I had to change was how often I eat. First, I trained myself to eat 3 small meals and 2 snacks. It took me about 6 weeks to be consistent with this. Second, I figured out how much time in between meals and snacks worked best. This took about a month after I trained myself to only eat 3 meals and 2 snacks. Third, I figured out specific kinds of foods that work best at certain times of day. I think I’ll be learning this for the rest of my life, actually, because there are always new foods to explore. This is my favorite part of the research! I know when to eat and can try out new things all the time, and still feel great instead of stuffing myself and feeling guilty later.

3. Third, be sure to keep track of what works for you.
1. I kept a food diary of what foods I ate, the time, and how I was feeling. This helped me realize that I eat when I am depressed, happy, and even bored. I had few structured meal times and needed to work on that.
2. I used a cute notebook at first, but I now I use an electronic spreadsheet to track what works for me.
4. Finally, give yourself plenty of time!
1. My illness caused problems for many years before we were able to figure out what was wrong.
2. When I look back, I realize the time that it has taken me to change my lifestyle is very short compared to how long my illness made me feel terrible.

Thank you for listening, and I hope you can use all or parts of this framework for yourself. I wish you the best on your wellness journey.