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When You're Stuck in the 'Grey Area' of an Undiagnosed Illness


I used to be intrigued by mysteries. Until I became one.

Three years on and numerous blood tests, three endocrinologists, three ultrasounds, three functional medicine treatment plans, two MRIs, one colonoscopy, one gastroscopy, one functional doctor, one kinesiologist, one acupuncturist, one psychiatrist, one reiki healer and countless medications/supplements/GP appointments later, I am over the mystery that is my health problems. I want a label. I want someone to say this is what is wrong with you and this is how we fix it.

 

I have accepted this is probably not going to happen. My health issues lurk in the grey areas between conditions – endocrine, anxiety and gastrointestinal problems have all combined, in a chicken and the egg situation where they cannot figure out the root cause. There is no neat category to place me in, no tried and tested treatment to recommend.

“So, what exactly do you have?” is a question I dread. It triggers a long, rambling explanation that generally ends with “I don’t know.” Treatment plans consist of “We could try this…” and “I’m hopeful this might…” No promises. No explanations. No guarantees. But there is hope.

Believe me, this is an improvement. There was a long time where doctor after doctor would look at me, some indifferently, others pityingly, and say, “I’m sorry, but I don’t know what’s wrong with you,” or “I feel bad for you, but there’s nothing I can do.” As long as there’s a chance something can help, I will keep fighting to find an answer.

Some of the side effects of my illness fall into the “indefinable” category as well. A broken metabolism, severe reactions to FODMAP foods and several strict nutritional plans combined with anxiety and poor body image to trigger disordered eating. Even my food problems cannot be labeled. I don’t fit into any one set of criteria – I have a fear of eating “unhealthy” foods, but I do also have a medical condition that is triggered by many foods. I’m scared of gaining weight but I do gain weight quickly and it is almost impossible for me to lose it. I eat, but I am fixated on eating the “right” quantities, scared equally of eating too little (impacting my chance of recovery) and eating too much (and gaining weight) or eating the “wrong” type of food and affecting my health even more. It’s an exhausting mental tightrope I struggle to navigate.

Labels make things clearer. It is hard fighting an enemy you do not know – like trying to strike at shadows. There are so many times I’ve wished for the simplicity of a diagnosis, even if that diagnosis would bring a whole new set of battles to fight.

It is hard wading through the murky depths of being undiagnosed. Yet it is not without hope. It is about finding people not afraid to take the uncharted path with you. It can be difficult, but they do exist. It is perhaps an endocrinologist willing to think outside the box, a therapist who can help you deal with the psychological impact of chronic illness or a dietician who can help you to slowly, painfully, rebuild a healthy relationship with food. Friends and family who stay with you, holding your hand as you stumble through the darkness, arms reaching out, hoping for some answers or a solution. I know I am lucky to have found these things, even if it took years of searching and dead ends. I do not take them for granted.

Being undiagnosed is complicated, but it is not hopeless. It can be terrifying, and isolating and frustrating. Just remember, you are not alone. You can get through this. The path may seem to be in total darkness now, but there will be patches of light.

While I admit when I used to imagine being unique this wasn’t exactly what I had in mind, I’m determined that even if I can’t explain the mystery of my illness, it will not stop me from finding a solution. My illness may not be identifiable, but it is not my identity.

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Thinkstock photo via Tetyana Rusanova.