A guest post by The Invisible Hypothyroidism – Rachel Hill
“Your antibodies are off the charts. Yep, you have an underactive thyroid.” As I heard my suspicions confirmed by the doctor, who gave me a diagnosis of autoimmune hypothyroidism so casually, I felt relieved. I finally had an answer. It was finally confirmed that I wasn’t mad. He signed a prescription for Levothyroxine, the standard T4-only medication for hypothyroidism, and thrust it into my hands as I took a huge sigh of relief. He even told me that here in the UK, we get prescriptions for this thyroid medication for free. That’s great, I thought.
Aged twenty-one, I left that doctor’s office and happily took my prescription to be filled at the nearest pharmacy, but as I took a seat and waited for it, I suddenly began to fill with dread. I was beginning a medication that I would now be on for life and I was still so young. The doctor hadn’t really explained to me what the antibodies meant, what my thyroid was or what my prognosis was going forward, I was just given a medication that I was told would fix my symptoms and make everything well again. Then I was sent on my way.
However, it remained a daunting experience still and I soon found myself going through a whirlwind of emotions – fear, confusion, frustration, anger, sadness, relief and grief. Fear for what else was to come; I’d already experienced so many horrible effects of hypothyroidism. Confusion about what exactly was wrong with me. Frustration regarding why it had taken so long to finally get to the bottom of my five year long battle with doctors. Anger because I didn’t understand why it was me having to go through this. Sadness for the many aspects of my life affected – work, social, personal and more. Relief for finally having an answer. And the big one, grief. Grief for the path I thought I was going to have in life, aged twenty-one with my life ahead of me, but feeling as if it was now going to be forever different, the image of my future forever changed and impossible to get back. I had lost it.
You see, receiving that diagnosis of a lifelong, chronic health condition seemed to change everything. It wasn’t anemia that I could recover from in a few months and then bounce back to how I was before. Being diagnosed with autoimmune hypothyroidism felt like a life sentence. I had read the experiences of other thyroid patients online, whilst I was waiting for the test results to come back, in anticipation of being diagnosed with the same condition and although some found medication helped, most people never seemed to fully recover, complaining of ongoing heavy fatigue, muscle aches and pains, thinning hair and fertility issues, just to name a few of the many symptoms.
Yes, I finally had a reason, a legitimate explanation, for feeling as if I had the flu constantly for the past eight months. For being forgetful and feeling confused. For being tired and ‘lazy’ no matter how much sleep or rest I got. I finally had a reason for struggling for so long and was started to join the dots in my declining health since I was just sixteen years old.
But it began to dawn on me that I may experience fertility issues one day, that I may struggle to conceive and carry children to full-term and that I will also need a lot of extra help in raising them, due to the effects of hypothyroidism. Caring for someone else suddenly seemed really scary when I was now in need of a lot of help myself. I realized that I couldn’t be as active as I once was and that I needed to compromise on what I could do without making myself more ill. I had to accept that my house wasn’t always going to be as clean and tidy as it used to be because I had to learn to prioritize my energy. I had to learn quickly that my body wasn’t as strong and capable as it once was and that some days I would be forgetful, achy and fatigued beyond words.
I had to learn to mourn the person I was before I developed hypothyroidism, as well as the life I imagined I would have. Everything was going to be different now.
The grief was real. The sadness was strong, but I had to keep on moving forward, becoming my own advocate and fighting for a life that wasn’t just settling. However, those initial emotions of fear, confusion, frustration, anger, sadness, relief and grief were soon replaced with new ones – hope, trust, kindness, anticipation and being thankful. Hope for the possibility of a better quality of life after researching and reaching out to other patients and resources. There is so much available in books and online to educate ourselves with and become our own advocates. Trust and self belief that I could get myself there. Kindness to myself when I felt a failure for perhaps being behind in life compared to my peers. Kindness to other thyroid patients too, as I shared what I learned with them, so we could all benefit from each other’s experiences. Anticipation for the time I will feel content and fulfilled with life again. And thankful. I felt thankful that I had been given the opportunity to meet so many wonderful fellow thyroid patients who unite to help one another. The kind of people who enrich your life beyond words and devote hours to building this amazing community. Thankful for the support I had received from my family and friends but most importantly, my other half, who had been a rock. Thankful for the resources out there that had helped me take back my life bit by bit, to regain control and happiness. I am thankful that it has made me realize that it is OK to not be Superwoman. That it is OK to take time out for myself and say ‘no’. I am thankful that this condition has made me a much more confident, independent person, protective of my health. I am thankful for the way in which it has changed me for the better; I am more understanding of various issues that other human beings go through and I am more patient and wise and have learned to stand up for myself in more ways than one.
I have been diagnosed for almost four and a half years now, and yes, I have accepted how my life and I have changed due to hypothyroidism, with the many ups and downs that it brings. I do still go through rough patches as I figure it all out. It’s natural. However, what I do not miss is blaming myself for failing to have the energy to work out, do housework, be socially up for seeing friends or well enough to attend work on bad days.
My life is different and always will be since that fateful day I was diagnosed, but after the many emotions and stages I have gone through, I have realized that the only way is forward and it’s important to not lose sight of that. We are our own best advocates, after all.
Rachel Hill, The Invisible Hypothyroidism
Thyroid Patient Advocate
Diagnosed with Hypothyroidism, Hashimoto’s Thyroiditis and Chronic Fatigue Syndrome (ME), as well as having Adrenal Fatigue and experience with Depression and Anxiety Disorder, Rachel Hill is an advocate for better quality of life for hypothyroid patients and writes at The Invisible Hypothyroidism, covering all aspects of what it’s like to have these conditions. Rachel is one of the many faces of thyroid disease and she’s passionate about helping those with hypothyroidism and giving them a voice.