“When a basic necessity of life becomes compromised, anxiety and stress ensue.”
That is how Diane described her experience with food and drink. Eating and staying hydrated had become sources of pain and uncertainty, affecting both her health and our everyday lives.
Medical consultations, tests, and investigations helped us understand parts of the problem, but they did not initially give us the relief or practical direction we needed. Over time, changes to Diane’s food and fluid intake became an important part of managing her symptoms. We feel fortunate to have found an approach that has helped, and we wanted to share what we learned.
Diane also chose to discontinue medicines she had been taking. That is part of her individual story, not a recommendation for others. Medication changes should be discussed with the prescriber, and needing medicine is not a sign that dietary management has failed.
Diane’s digestive difficulties began in childhood and changed over the years. Some symptoms persisted, some worsened, and others appeared later. Digestive symptoms can have different causes, and the appropriate treatment depends on what is contributing to them. Our experience does not establish a single explanation or solution for everyone with hEDS or HSD.
For us, progress has meant finding foods and drinks Diane can tolerate while protecting her nutrition, hydration, and enjoyment of meals. It has taken patience, continued medical follow-up, and adjustments along the way. The aim is to maintain as much variety as possible while avoiding what genuinely needs to be avoided.
At the most difficult point, food and drink felt like the enemy of our household. Today, we enjoy a variety of meals and beverages again. We are more selective, but eating has regained much of its pleasure.
Although Diane encourages me to eat whatever I like, we mostly share the same meals because that works well for us. We each still have our favorites. Other households may find a different arrangement that suits everyone’s needs.
We hope this website offers useful ideas, questions to discuss with your healthcare team, and reassurance that you are not alone. What helped Diane may not be the right approach for you, and improvement may take different forms. You deserve to have your symptoms taken seriously and to receive support in finding a way forward.