How long has your search for health left you floundering?

I floundered for four years with no clear answers to explain why my body didn’t absorb the food I was eating, why my weight was dangerously low even though I made every effort to gain weight.

I was stressed and felt guilty. I was stressed because there was always so much to do!

It seemed like I always had another doctor’s appointment to fit into my schedule. I felt guilty having to take time from work to go. But I kept seeing my doctor because I hoped that some test would explain my poor health.

 I was stressed and felt guilty. I was ashamed. I felt unheard and alone. My hope dwindled. I was scared and desperate.

I was stressed and felt guilty. I was ashamed. I felt unheard and alone. My hope dwindled. I was scared and desperate.

I also spent a lot of time cooking. Careful food choices kept my worst symptoms at bay, so it was worth taking the time… except I was losing time I wanted to spend with kids and my husband. We also stopped eating out, and I felt more guilt for being a “difficult” eater and for robbing others of special foods.

All the food prep time also meant less time for relaxation, or even for sleeping. My poor health was making it impossible to find balance. So my stress grew, and I became more and more overwhelmed.

I was ashamed. I worried about what people were thinking about me, about why I was so thin. When they didn’t know my story, what did they believe about me? Eating disorder? Poor self-care? Whatever people were thinking, I feared that I was being blamed for my poor health.

I felt unheard and alone. I would tell my doctors “when I don’t eat these foods, I feel better.” I would be told, “I’m not sure it’s a good idea to cut out those foods. They can provide valuable nutrients and calories…” Why was there no respect for my experience and knowledge of my own body?

Well-meaning acquaintances didn’t understand either. “Oh, you’re not eating gluten? I’ll make you this great gluten-free recipe!” But then the recipe would include eggs or milk, which weren’t any good either. Why wouldn’t anyone truly stop to listen?

My hope dwindled. When my family doctor found no obvious clues, I was referred to specialists. I waited a long time for those appointments – for months I was in limbo, desperately waiting for answers.

Then none of the specialists found any answers for me, either. The ones who had been my hope had nothing to give me. My greatest fear – that my health struggles had no end in sight – was my reality.

I felt abandoned. I felt betrayed. I was depressed.

I was scared and desperate. I had no control over my weight. I was fighting so hard to gain control, and just kept failing – and I worried that the uncontrolled weight loss would cost my life. Someone had to have an answer, surely…

Obsessively I searched the web for help. I had endless questions, my theories changed every few months. I was desperate for clarity, for relief of symptoms, for vibrant energy… I was desperate for a life.

I hated what my life had become, and I didn’t know how I was going to escape my reality! I didn’t want to keep living like that…

…in the end, I was lucky. Eventually, I found answers.

 

I know that the floundering I experienced is not unique. Each person has their own details, but many patients and care partners experience shame, stress, guilt, desperate fear, isolation, being unheard, and losing hope. And my heart breaks knowing this is true.

It is my mission to improve patient experiences, one person at a time. This is my offer to you.

You Don't Have to Journey Alone!

Kirstin Veugelers