"It is during our darkest moments that we must focus to see the light" - Aristotle
It is impossible to know how you are going to react to a piece of news until you are actually there in the moment. Try to imagine that you have just been given a piece of really sad, life-changing news. How do you think you would react? What would your emotional state be?
When my doctor first told me that I had a chronic and incurable autoimmune condition my first reaction was not what you might expect.....I was really happy! Finally, I knew what had been going wrong with my body for the last 25 years. My illness wasn't all in my head; it was real!
I had been regularly going to see GPs and hospital consultants since I was 5 years old. All of my health issues centre around my gastro-intestinal system and urinary tract. I regularly suffer with urine infections, excruciating stomach and back pain, nausea and and vomiting, diarrhoea and constipation, fatigue, dizziness, headaches and low grade fevers. The same symptoms would suddenly flare up and then after a few weeks/months they would disappear. I had several very bad spells where I was continuously ill for many months (age 6, 17, 23, 34, 38, 40 - 41).
My doctors were completely stumped. They ran and repeated multiple tests (countless blood/ stool/ urine sample analyses, Coeliac and Crones disease tests, ultrasound scans, x-rays, barium meals, CT scans, MRI scans, cystoscopies, sigmoidoscopies, colonoscopies, skin biopsies) and none of them showed anything wrong with me. In the middle of all the testing my illness would inevitably disappear again and the symptoms would be chalked up to "a virus" or Irritable Bowel Syndrome (IBS). I would be given some advice on my diet and a list of foods to avoid.
A few years later the same symptoms would return, I would wind up in A&E with excruciating pain and the whole testing process would begin all over again.
In terms of other diagnosed health issues I had a stubborn patch of psoriasis on my scalp and in my 20s I was diagnosed with autoimmune thrombocytopenia. My doctors seemed completely unconcerned by these autoimmune issues and so I didn't worry about them either. When I was pregnant with my daughter things started to go wrong in my third trimester; my blood pressure sky-rocketed and there was protein in my urine. I landed up in hospital with pre-eclampsia and my daughter was induced and delivered two weeks early. As it was a pregnancy illness nobody thought to consider whether it was part of a wider autoimmune illness.
It was in my 40th year that things really started to change. The periods between my getting sick seemed to be getting shorter and I was getting flu-like illnesses with fever and muscle pains more and more frequently. The stomach and back pains became constant and I was getting arthritis pains in my hands, wrists, elbows, knees, ankles and feet. And there was the Malar rash (the bright red butterfly shaped rash) plastered right across my nose and cheeks.
In March 2018, I walked into my GPs office and asked, "Do I have Lupus?"
In terms of other diagnosed health issues I had a stubborn patch of psoriasis on my scalp and in my 20s I was diagnosed with autoimmune thrombocytopenia. My doctors seemed completely unconcerned by these autoimmune issues and so I didn't worry about them either. When I was pregnant with my daughter things started to go wrong in my third trimester; my blood pressure sky-rocketed and there was protein in my urine. I landed up in hospital with pre-eclampsia and my daughter was induced and delivered two weeks early. As it was a pregnancy illness nobody thought to consider whether it was part of a wider autoimmune illness.
It was in my 40th year that things really started to change. The periods between my getting sick seemed to be getting shorter and I was getting flu-like illnesses with fever and muscle pains more and more frequently. The stomach and back pains became constant and I was getting arthritis pains in my hands, wrists, elbows, knees, ankles and feet. And there was the Malar rash (the bright red butterfly shaped rash) plastered right across my nose and cheeks.
In March 2018, I walked into my GPs office and asked, "Do I have Lupus?"
Ten months later I finally had the answer...I do have Lupus (SLE).
It might seem odd to find joy in receiving a significant medical diagnosis but I had already known that I was sick. I have most likely been living with my autoimmune illness my whole life but because no doctor had put a label on it I couldn't receive any treatment. For years I had been made to feel as if I was a hypochondriac or 'imagining it' simply because the tests my doctors had performed hadn't shown anything to be wrong. It was the same at work - the doctors can't find anything wrong so it can't be a real illness. It had never occurred to me that the doctors had been asking the wrong the questions and therefore performing the wrong tests. My diagnosis was the evidence that I needed to prove to myself and the world that my illness was real. I really was sick!
The quote by Aristotle is particularly relevant to my diagnosis journey. I have had many dark moments during my periods of illness, times when nobody could tell me what was wrong with my body and there was no treatment available to help me. Things might have been exactly the same right now if I hadn't set myself on a new path, one which ultimately led me to figure out for myself what had been going wrong all this time.
I guess the lesson is not to give up on yourself! If you can't find an answer in one place, try searching in a different one.
It might seem odd to find joy in receiving a significant medical diagnosis but I had already known that I was sick. I have most likely been living with my autoimmune illness my whole life but because no doctor had put a label on it I couldn't receive any treatment. For years I had been made to feel as if I was a hypochondriac or 'imagining it' simply because the tests my doctors had performed hadn't shown anything to be wrong. It was the same at work - the doctors can't find anything wrong so it can't be a real illness. It had never occurred to me that the doctors had been asking the wrong the questions and therefore performing the wrong tests. My diagnosis was the evidence that I needed to prove to myself and the world that my illness was real. I really was sick!
The quote by Aristotle is particularly relevant to my diagnosis journey. I have had many dark moments during my periods of illness, times when nobody could tell me what was wrong with my body and there was no treatment available to help me. Things might have been exactly the same right now if I hadn't set myself on a new path, one which ultimately led me to figure out for myself what had been going wrong all this time.
I guess the lesson is not to give up on yourself! If you can't find an answer in one place, try searching in a different one.
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