This morning, I received a call to remind me about receiving my booster vaccine against COVID-19: a phone call that came after two text messages and two emails.
I have always been open about my vaccination journey: and today I tell you about why I’m hesitant to receive the booster vaccine.
It has nothing to do with vaccine efficacy.
It has everything to do with my own distrust with the medical system.
2010 – 2012: You just need to lose weight
I was only 17 years old when I started experiencing chronic pain and chronic fatigue. I had blood test after blood test. I saw a rheumatologist, a neurologist and a dermatologist.
I was told to lose weight. I was a size 12 – 14 at that stage, and was running 10km every other day. I was told that there was nothing wrong with me, so I continued with a vigorous exercise program. Once I was overwhelmed with pain and fatigue from this routine, I was prescribed weight loss medication.
I was told to work on pain management. I trialed many different prescriptions, but nothing worked. I was prescribed Tramadol. I was told that it wasn’t addictive, and that there would be very few side effects.
In the end, the stress of the process exacerbated my conditions, and I gave up: I focused on life.
2012 – 2020: This is my life now
I continued to live with chronic pain and chronic fatigue. There were periods of my life that were better than others. There were times I was able to exercise and lose weight. However, there were times wondered if the struggle was worth it. I couldn’t see the light at the end of the tunnel.
Over those 10 years, I would get sick often: I would get bronchitis (or similar) twice a year, once resulting in a chest infection. I felt gaslit about my health, and I had resigned myself that, whatever was wrong with me, I would find out when I was at deaths door.
I tried everything. I saw a naturopath. I did yoga. I listened to hypnotherapy. I tried a gluten free diet, a vegan diet, and I tried those juice cleanses. Nothing completely worked, and I ended up focusing my time and energy to things I enjoyed: if I was going to be in pain, I was going to try to be happy.
I travelled. I studied. I hiked. I smiled. I got engaged.
“Pain is inevitable. Suffering is optional.”
2020: We found something
10 years later, in a new city with a new doctor, I picked up the courage to start the process again. I was experiencing another ‘flare up’ of my symptoms, presumably as a result of the stress relating to the COVID-19 lockdown and of starting my business.
Very quickly, I was diagnosed with hypothyroidism. However, I knew that there was more to my story, and I asked for my thyroid antibodies to be tested. My results were very positive for Hashimoto’s Disease. While the normal range for thyroid antibodies is less than 10, mine have consistently been over 1,000.
I thought I found an ‘answer,’ but when I went to the pain management clinic, I was told that my pain wasn’t wholly attributed to Hashimoto’s. I was additionally diagnosed with fibromyalgia, restless legs syndrome and peripheral neuropathy. I was prescribed CBD oil, but the prescriptions are too expensive. I again resigned myself: this is just my life, there is nothing that anyone can do for me.
During this time, I was also focusing on my mental health, because I continued to live by the same motto: if I’m going to be in pain, I’m going to try and be happy. Through this process, I was diagnosed with ADHD and Autism.
2021: You’re just stressed
Earlier last year, I was admitted to hospital with an infection. Many of my followers will know that over the past 10 months I’ve struggled significantly with my health. This started before I received my vaccination and was not vaccine related. However, it is part of my story of why I chose to get vaccinated. I know that my immune system is weak, and I know that I would seriously struggle if I caught COVID-19. I didn’t need a professional to tell me.
My immediate thought was that the anxiety, heart palpitations, insomnia, night sweats, and others were a result of my thyroid and potentially overmedication. My thyroid hadn’t been able to stablise in the normal timeframe, and I found myself in a position where I was required to increase my medication levels every other month. I said to my doctor: I just want to see someone who specialises in thyroid health. I’ll pay to go private. I don’t care.
My doctor did a blood test, and unequivocally told me it wasn’t thyroid related.
I knew that it’s common for people with Hashimoto’s Disease to have a secondary autoimmune condition, and when we found other antibody markers, I paid to see a private immunologist. I thought that, at least, he would have told me about Hashimoto’s Disease and how it affects the body: because, to be honest, I didn’t completely understand my own condition.
He told me I don’t have an autoimmune condition, I have a metabolism problem. His view was, essentially, that if he cannot prescribe steroids, that you don’t have a diagnosable condition. I cannot tell you how hard it is to be told this, when I have a diagnosed autoimmune condition, which affects my metabolism. I felt so let down.
My GP was initially supportive, however, I quickly lost trust in the clinic. I was repeatedly told I was just stressed, but when I asked for anti-anxiety medication, I was told that because I had ADHD I was more likely to become dependent on it. I was prescribed sleeping pills, as an apparently less addictive alternative.
I was made out to be a drug seeker, and I was left with a sour taste after being asked: “Do you intend on getting vaccinated?” I responded that I’m in Group 3, and I’m waiting to be provided further information. This doctor was surprised, and asked me why I was in Group 3: this was someone who did not genuinely care about my health.
I again resigned myself to the fact that this was my life. I asked for pain management options. I was prescribed Gabapentin for the pain, which helped for about a week, before throwing me into a deep depression with suicidal thoughts. I again thought: this is my life. I reduced my workload, and attempted to simply ‘be well’, whatever that meant.
2022: My journey to recovery
I joined an internet support group for people with Hashimoto’s Disease and other thyroid-related conditions. I wanted to know how others were managing their conditions.
I learnt more from those internet support groups in a few days, than what I did from my medical professionals for the previous years. I was told I should immediately test my B12 levels, as it was common for people with Hashimoto’s Disease to have Pernicious Anemia (another autoimmune condition).
My results came back as borderline. The normal levels for Serum B12 are between 170 – 600pmol/L, and mine were sitting at 200. However, in looking through my records, they had been low since 2010, with my first test coming back at 230pmol/L. With the introduction of applications like “Manage my Health” and “My Indici”, I’m able to review all previous blood test results. I saw that the blood clinic at the time of my first test in 2010 made a note to my doctor that if my levels were below 250pmol/L, and I was experiencing signs of B12 deficiency, then additional tests should be conducted because “deficient” will be different for each person.
It seems that not much is known about B12 deficiency.
At this point, I was done listening. I started a management plan, and I’ve been self-injecting B12 as required, and my health has significantly improved. This has lead me to think: what else am I potentially deficient in?
… What else has been overlooked …
The reality is, I don’t need a diagnosis. I don’t need medication to manage the symptoms. I want to treat the root cause. I’m now on a low-inflammatory diet and introducing additional vitamins.
My husband has been an amazing beacon of light through this journey. He has done a significant amount of research, and he is managing the change of die, and we are slowly moving to all natural alternatives for health and beauty products. It would be my preference to do this with the aid of a medical practitioner, but I’m exhausted, and I think to myself: how many doctors will I have to go through before I find one I trust?
Conclusion: I don’t trust the system
I have learnt that I am my own health advocate, and I do not trust what any doctor tells me about my own body and my own health. For over 10 years, my doctors said I was fine. I was told that I’m stressed and overweight, and it was insinuated that it was in my head.
During this time, the lack of B12 has been causing serious harm to my body. Chronic B12 deficiency can cause nerve damage. It causes peripheral neuropathy. It causes changes to your mental state. Chronic pain. Chronic Fatigue. Hair loss. Weakness. Difficulty walking. It causes almost every symptom I’ve been experiencing.
I’m glad that many people haven’t had this experience: I wouldn’t wish this on my worst enemy.
It’s great you can trust your doctor: That just isn’t my experience, and it’s not the experience of many of us.
We’re not conspiracy theorists. We’re real people with real stories.
I will make my own decision, in my own time, and in consideration of my own body.
[Editor’s Note: This article was first published by Ashleigh the Advocate in February 2022].