“But You Look Fine”
by Claire Waite
My name is Claire. I am 34, originally from Galway and living in Meath, Ireland with my husband, Ben. In life, we all deal with unwanted stuff that is thrown our way! My struggles evolve around my health; battling to be heard and believed, correctly diagnosed, treated and ultimately regain the best quality of life that I can.
I first noticed changes in my health at 19, by 22 I began to feel physically unwell. My hair thinned, I ached all over, I was utterly exhausted and my belly was permanently bloated and painful (see gallery for pics). Glandular fever, mold and mercury toxicity, chronic stress, excessive antibiotic use and Helicobacter pylori bacterial infection gradually weakened my immune system. These issues led to a long list of diagnoses including irritable bowel syndrome, chronic acid reflux, chronic fatigue syndrome, fibromyalgia, PMS, idiopathic hypersomnia and MSIDS/persistent Lyme disease syndrome.
During my twenties, I underwent an endoscope, esophageal and gastric manometry, live blood allergy testing, food allergy screening, an MRI, internal abdominal and pelvis ultra sound checks, extensive blood testing and a sleep study. I trialed Nexium, an antacid medication, Provigil, a medication to treat excessive sleepiness and Ponston, a non-steroidal anti-inflammatory drug to try and best manage pain. In search of relief, I desperately tried every treatment I could think of, including energy-tapping, traditional Chinese cupping and acupuncture, Amatsu therapy, lymph drainage massage and chiropractic sessions. I attended a specialist dentist in Kilkenny to have all my amalgam fillings replaced with white fillings. I sought help from five separate herbalists and two healers. No matter what testing and treatments I underwent, I never made any long-term substantial progress. I gradually became more ill. I was thrown from consultant to consultant like a hot potato. I felt lonely, confused and abandoned. How could every. single. test. return clear, yet I felt such debilitating pain and relentless fatigue!? I just didn’t get it!
A neighbour from my hometown, Moycullen in Galway recognised my symptoms as similar to her own. She had been bitten by a tick and diagnosed with chronic Lyme disease. She explained that the blood test used for diagnosing Lyme disease in Ireland was highly inaccurate (less than 50% accurate). I had tested negative for Lyme infection a few years previous to this. At 30, under her guidance I tested positive for the bacteria Borrelia burgdorferi, which is a known cause of Lyme disease (a bacterial infection from a tick bite) with Armin Laboratory in Germany. I also tested positive for Epstein-Barr virus. My result of a CD57-cell count test indicated that I had a chronically suppressed immune system. I began strong multiple antibiotic treatment with my consultant, who specialises in infectious diseases. I was heartbroken and deflated when a treatment that helped others, failed. I remained sick and my fight to regain my health continued. From there, I tried herbal treatment with a Lyme herbalist specialist. Unfortunately, after many months I decided to stop this treatment as I felt worse rather than better.
Through attending appointments with my consultant, sessions with complementary therapists and researching my illness, I learned to rename my diagnosis more accurately as Multi-Systemic Infectious Disease Syndrome (MSIDS). MSIDS is a term coined by Dr. Richard Horowitz used to describe a ‘symptom complex’ that can create persistent and debilitating illness. It identifies up to sixteen overlapping sources of inflammation and the symptoms they cause. My illness was instigated not only by a tick bite but other factors such as a viral infection (Epstein-Barr), a bacterial infection (Helicobacter pylori), mold and mercury toxicity, excessive antibiotic use, chronic stress and a host of other microbial imbalances that caused my immune system to become compromised and unable to function adequately. This led to a cascade of cumulative long-term health issues. You can get bitten by an infected tick, only for your immune system to effectively fight off the infection. Unfortunately this wasn’t the case for me and my already withered and worn out immune system!
In late May of this year 2021, my illness has led me to make the tough decision to sadly say goodbye to my career as a school teacher. My new ‘why’ in life centers around helping those who live with long term health issues. As Viktor E. Frankl once said “Suffering ceases to be suffering at the moment it finds a meaning”. I’m hoping this book will be the beginning of a set of simple ways that I can offer support and empathy. My days are pretty basic! Due to fatigue, I tend to only have the energy for a shower and one small activity per day. My typical day tends to go like this – wake, shower, bed, breakfast, small walk, bed, lunch, one activity/appointment, dinner, couch, bed and repeat. I sleep endlessly (10:30 -11 hours minimum) but I never feel rested or energized. If I wake earlier than 11:30am (by setting an alarm) ,I find the entire day is a write-off as my symptoms of fatigue and pain become far more intense. My pain is at it’s strongest when I open my eyes each morning and at it’s best before I fall asleep. I find a shower in itself to be draining. My body feels heavy and achy (like a permanent flu). Each week I attend appointments, go for small walks, meet up with friends and family and watch far too much TV! I love baking, interiors, online shopping, anything involving food and fashion, walks in nature and trips to the cinema. I’m happiest by the sea. I drag Ben to the beach at least once every fortnight! It is my dream, one day, to live by the sea!
I attend weekly complementary treatments in applied biomagnetic therapy and acupuncture/reflexology to try and best manage my symptoms. I live with daily pain, fatigue, memory loss, blurred vision, digestive issues, and dizziness, so bad at times, I just want to cry. I don’t know if I will ever fully regain my health, but I like to hope that someday I will. I’ve tried my hardest, like us all, to make the best out of the cards I’ve been dealt. Time and time again, I have picked myself up when treatments fail. I decided to work hard on accepting where I am at, while remaining hopeful that my life could change for the better.
The most upsetting part of this experience has been the many times that I have been labelled by friends and doctors as lazy, dramatic, negative, crazy and attention seeking. I’m ashamed to say it got to the point that I turned against my gut feeling and believed that they were right. I accepted my symptoms were all “in my head” and I stopped seeking help. I punished myself and pushed through the pain (for years!). I felt such shame. This strategy didn’t work and I sadly became more and more unwell. It got to the point where I couldn’t function and I was forced to beg for answers…yet again.
“But you look fine!?” was created from painful lessons learned throughout my own journey over the past twelve years. Although I have no background in any medical field, I write from the knowledge of extensive experience. I have gone through every step of the process, beginning with fighting for a diagnosis and ending with the management of my symptoms through lifestyle changes and complementary therapies. They say to write about what you know…so that’s exactly what I did. I propped myself up in my bed and day by day, bit by bit I poured my soul into this book!
In “But you look fine!?” I address the huge mental toll being ill indefinitely can have on a person. Only a few weeks ago, I heard the phrase “Put up and shut up” being used in casual conversation… I feel this approach on dealing with life’s physical and mental challenges is incredibly damaging, unhealthy and maladaptive. Although we can adapt ourselves as best we can to the circumstances and people that surround us…we all have the right to speak up about our difficulties, upset and concerns. Feeling shamed into living a life as if we are healthy, while suffering in silence should not happen. Speaking about your worries, inability to work and symptoms/treatments etc. should never evoke a cold and dismissive response, where you end up feeling worthless, weak and embarrassed. Feeling accepted, supported and respected without condition, by your closest circle is especially important when living with a long term illness. For years I lived by the “Put up and shut up” motto and it only led to misery and more illness. Adjust your life, in any way that you can, to help make it as enjoyable as possible and if you want to speak up…do! You owe it to yourself!
Ben and I met in Galway in April, 2009. He has been by my side through it all! Through every set back he lifts me up and keeps me smiling. In 2016 we bought our first home together. After two postponed wedding dates, we finally married in December 2020 surrounded by 25 of our closet family and friends. Chronic illness impacts everyone…from siblings and children, to mothers, fathers, friends and partners. In “But you look fine?!” I hope to offer loved ones an opportunity to be reminded of how amazing and strong they are. Always know that your compassion and love is seen, felt and greatly appreciated. You are heroes!
I hope my story offers you (a chronic illness fighter) the strength you need to follow your instinct. If you are told that your results are clear, you are too young to be sick or that you look fine (yet you know something is wrong), trust your gut. Never give up fighting until you are heard and supported. Remember you don’t need a diagnosis to feel empowered to make changes. Don’t suffer, adjust your life in anyway that you can…right now. You deserve to live well rather than struggle to survive. “This too shall pass” is a phrase that has always irritated me, I want to shout “When!?!? When will this fecking illness ever pass!?” I’ve learned instead of living a life chasing and wishing for the day I’m ‘fully better’ to focus instead on controlling what I can control. I hold on, through the worst days…. knowing a wave of less intense symptoms will come. No matter how many years (even decades) pass on by…hold onto hope….because miracles and positive change are possible!!