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Living With My Diagnosis



Just as I was about to set off on one of the biggest, toughest and most gruelling expeditions in my life... the news came.


"You've got an extremely rare genetic disorder." the Dr told me.


Before this moment, I'd almost gotten used to the pain. For five years I had to have tests, examinations and invasive investigations, all whilst serving in the military. But at the point where I felt most hopeless like I'd gone crazy, like it was all in my head... I finally got my diagnosis.


"You've got TRAPS" the Dr told me.


Tumor Necrosis Factor Receptor Associated Periodic Syndrome (TRAPS) is a rare genetic disease with episodes of recurrent fever; abdominal, chest, and muscle pain; red and swollen eyes; and a typical rash lasting for more than one week.


The sense of relief it brought me to finally have an answer was something I can't explain. But at the same time, the anxiety of not knowing what was going to happen in the future and the daily need to inject my medication left me feeling very torn. "How can I make this work when exploring the South Pole?!"


It was the day of our leaving party for my expedition before the team and I headed off to Antarctica, and I had to see the senior consultant.


"I don't advise you to go." he said. "The effects of your new medication in the harsh environment out there isn't going to be a good mix".


My heart sank. I had trained for this expedition for years. I was going to be following in the footsteps of the famous Captain Scott to the Geographic South Pole. No. I couldn't miss this opportunity.


"No isn't an option Dr". I refused to stay home.


Fast forward to my return, the Dr was elated that the medication had worked and that I was OK.


Why am I telling you this? It's not for sympathy and it's not to impress you. Actually, my message is about accepting that which is out of our control and learning to live with it. I can't take away the fact I have TRAPS, but what I CAN do is live with it, manage it and plan for it. I made sure on my expedition I accounted for the extra medication weight, I had to ensure it never froze as we were in such torturous conditions, etc. If we don't accept these things and instead fight that which is out of our control it can be both mentally and physically draining.


I hope this helps those who may have been diagnosed and living with an illness or injury. I’m very careful not to self-stigmatise myself and become the condition I live with, instead, it’s living with me.


Taking time to eventually get a diagnosis can be relieving but coming to terms with living with it can take time… Stay strong everyone!




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