The Maze
For most of my life, I always knew I wasn't like "normal" people. I couldn't run or play sports with kids in gym class. I was tired and had sore muscles all the time. I got out of breath simply by going up stairs or bending over to tie my shoe.
As an adult, I would almost pass out several times a year for no reason. I would hop from one doctor to the next, trying to find answers. I was given incorrect and absurd diagnoses, even being told by one that "it was all in my head."
Many specialists told me my problem was deconditioning. This caused me to isolate myself and led to a life of pretending that I was fine and capable so I would not appear to be crazy. I would exercise as hard as I could but only felt worse, and my health never improved.
I was diagnosed with a congenital heart defect at age 22, resulting in open-heart surgery and cardiac ablation. Later, I had Tarlov Cyst surgery and experienced mild joint hypermobility, arterial tortuosity, and orthostatic/dysautonomia issues.
Finally, all of these characteristics were put together, and I was diagnosed with LDS type 2 at age 42. A confirmed diagnosis explained a lifetime of challenges and symptoms no doctor had been able to figure out.
However, when the LDS confirmation finally came, relief was short-lived. I was told there is no cure, and my symptoms didn't necessitate medications. My only prescription was to maintain a healthy diet and exercise regime. Get lots of salts, fluids, and plenty of rest.
Most of the time, living with LDS feels like I'm navigating through a maze. I'll read or learn something new and have hope that it will be the thing to make a difference for me. But it might turn into a dead end, and I'll start again looking for ways to feel better. It's a good reminder that everyone is different, and no program works for everyone.
I work really hard to maintain a level of activity that promotes good health both physically and mentally. I have always loved the outdoors and enjoy many hobbies. I walk, garden, and participate in long-distance road cycling. But even when I feel my healthiest, these things can come harder for me than others.
Fortunately, I have the LDS community, which encourages me and reminds me that I am not alone in my challenges. With this community, I am always learning and growing from listening to others and asking questions. My medical team and my husband are constant sources of support, but it is always nice to talk to people who can relate to having this condition and the questions and frustrations that can come with it.
Through it all, LDS has taught me never to give up hope. My faith led me through many dark days, weeks, even months. But I always come through, ready to start over, wiser for the wear. I can always find something to be grateful for, even if it's just enjoying my cat purring on my lap.
This condition is complex and rare. Just like no treatment works the same for everyone, no two people with LDS are alike. So everyone's journey through the maze is a little different, too. I'm still learning how to navigate the maze, but I'm finding my way with the help of many people. Like others have done for me, I hope to help others who are starting their own journey in the maze. Some paths are harder than others, but we give each other hope and strength to persevere.
- Beth Meyer