Despite obvious family history of thyroid disease (her mother, aunts, cousins and grandmother are all sufferers of thyroid disease) and many common symptoms of hypothyroidism, Jane Rochester struggled and suffered needlessly for decades. Her tale of ill health and unfortunate genetics is sadly not unique and in fact shared by hundreds of millions of people around the world. I have no doubt the majority of my Hypothyroid Mom readers will be nodding their heads as they read Jane’s story and feel like she is telling their own story too.
Written by Jane Rochester
I would like to talk about how thyroid disease has completely changed my life, sometimes for the worse, but others definitely for the better. Why, you may ask? Considering this disease has at times brought me to my knees, it seems hardly unlikely that there have been any plus sides; I’ll try explaining best as I can.
You will all be aware of the havoc thyroid disease inflicts upon our bodies, and my story will have little difference to that of your own. Like many of you, this began as a teenage complaint, and I had little knowledge of what was actually going on with my body. For example, I had no clue that my chronic sun allergy was of any further medical significance than a condition in its own right.
Another ‘big deal’ problem for all of us is that of body weight. When you are simply not responsible for the amount of fat your body chooses to adorn your bones with, and no matter how many fad diets you allow to become the next strict eating regime following the failure of generally healthy eating plans, you soon become all too aware that you actually have zero control over what is taking place within your body.
This is a hard concept to grasp for anyone, no matter what age we are when this blight descends; the harsh fact is we have little control over the outcomes and unique experiences this disease will create for us. I am not saying for one minute that we as sufferers will never regain our health, I am simply trying to illustrate the fact that we will at times have very little control over what transpires, and at times such as these, we begin to realise how frail and vulnerable we actually are. In my opinion, this has to be one of the most negative aspects of this cruel condition.
Problem is, we have grown up within a culture whereupon if we should suffer with any simple ailment, we can walk a few steps to the medicine cabinet and usually find a simple remedy. If our ailment is a little more complex, we can visit our family doctor who will scribble the magic remedy on his writing pad and thus provide a suitable cure. Most of our lives have been shaped with the idea that our doctor, or at worse times still our hospitals can usually fix us. Until the loud knock of thyroid disease descends and raps boldly at the door.
I imagine we are all very similar in terms of our experiences of thyroid disease; beginning to feel ill on a low level with little things starting to go wrong. Perhaps our skin is beginning to dry out, or we are starting to feel chilly on the warmest of days. Maybe we have begun to suffer with the embarrassing problem of constipation, or started to endure regular onslaughts of infections upon the body whilst our body weight steadily rises.
To begin, we rely on our previous knowledge and start to look for remedies; antibiotics from the doctor, laxatives from the chemist, emollient lotions from the store, wearing warmer clothes etc etc, but then the signs and symptoms hike up a notch.
We often begin to feel exhausted and find that previous day to day activities are now proving somewhat difficult if not impossible. We try caffeine products for energy and many kinds of diets after we discover the usual reduced calorie and exercise plans fail to work, but nothing changes. In fact weight remains on the increase whilst at the same time feelings of fatigue accelerate.
Perhaps if you are female (and thyroid disease sufferers generally are) you will also be suffering from excessively heavy menstrual periods and this has now become the cause for frequent trips to your trusted doctor. Tests are undertaken and you probably end up donating armfuls of your liquid red stuff as a means to detect the cause.
As you sit in the chair at your following appointment, dressed for the harshest of winters on a mid-July summer’s day, you soon become alarmingly aware that the ‘professional’ on the other side of the desk appears to have the littlest of clues as to what is actually happening to you. No matter how you describe and discuss your lorry load of problems which are in fact beyond your control, the man in the coat smiles in an often patronising manner and goes on to tell you that you are in fact fine, or more appropriately perfectly normal!
Nothing can prepare you for the feeling of utter despair that ensues following the non-diagnosis of a condition that is beginning to take over your life in a devastating manner. Worse still is the emotion that takes place when the doctor goes on to offer you a prescription for anti-depressant medication because he now believes that all of these struggles are in fact in your head. He will also sometimes offer the number of a dietician to further reinforce the notion that this is largely of your own doing whilst you raise from your chair in utter disbelief.
And for me, this was the worst part about the disease itself; although hypothyroidism was a killer to manage, the fact that my trusted doctor would do absolutely nothing to help me proved an awful lot to get my head around.
And this is where the feelings of vulnerability begin to creep in; It’s a scary notion trying to accept that a doctor does not have the wherewithal or knowledge to make you well again. I mean who on earth do you turn to to make this all stop? How on earth can you stand up and fight whilst your energy levels are dwindling rapidly somewhere around the very floor you stand on? Well my friends, there is often and unfortunately no one but YOU to get YOU out of this mess! Or so it feels at the time.
So you begin to research; you read and read and read each and everything you find that discusses a similar pattern of symptoms to those of your own. Each and every time, the search bar leads you to pages discussing hypothyroidism. So you begin to focus your studies on this particular disease and find that the stats read like your own life history. Can it really be that simple? And if so, how could your doctor have missed it?
But then you read a little further and discover there is one blood test being used by most mainstream doctors which is in fact often useless in detecting this disease, and thus if you don’t tick the box at the lab, you are highly unlikely to be gifted with a diagnosis or any treatment whatsoever.
This was my life, and I can tell you it was a scary knowledge. So at this point I figured that I had two options, I could stay ill and vulnerable and simply accept this to be my future path, and believe me, the fatigue I suffered with back then made this option all the more alluring, or I could learn how to make myself well again.
The latter was my choice; at 39 years of age I decided that enough was enough, and that I would have to be my own best advocate.
Websites such as Hypothyroid Mom, and online support forums came to the fore, and soon became my lifeline. I was directed to a more knowledgeable doctor in the UK and I learned about asking for all of my previous blood test results as a means to baseline my health.
I then discovered which vitamins and minerals were lacking from my body and thus began to repair from the bottom up. At this point I began natural thyroid medication and slowly but surely began to regain my health. This was not a simple process, but definitely a liberating one!
I then became more vocal about all that I had learned, realising that so many others were in fact in the same position as me. All I wanted to do therein was create awareness in my own way. I began with the sharing of information provided again by sites such as Hypothyroid Mom, and then I began creating little info bites of my own via typical e-card sites.
The culmination being the attempt at my own story!
Thyroid disease has created mammoth struggles for me, and at times I still slip back into poor health and thus have to work again at trying to put things right. I am reminded of my own fragility at times like these, however, I am now attacking this problem from a completely different perspective; the fact that I am in charge of my own health is an entirely empowering notion. I listen to my body and act accordingly. I have definitely gained strength from taking control, even though I feel that I shouldn’t have had to!
For this reason I will always remain an advocate for thyroid disease, sharing and creating information with others which will hopefully bring about the necessary changes in order to gain us all the help we so richly deserve. It’s a cliché I know, but we must never give up. We have a voice, and we must use it; I have always believed in strength in numbers, and in turn experiencing empowerment when you become your own best advocate!
About Jane Rochester
I am a married mother of two, aged almost 42 years. I run a small Post Office with my husband and love anything that involves literature and Rock Music. I am also a non-bra burning feminist who feels obliged to speak out about wrong doing and in this case the travesty that is the poor state of affairs for thyroid disease sufferers like me. At times when considering the fact I will for all intent and purpose be left alone to monitor, treat and endure this disease for the rest of my life, I cannot help but feel somewhat vulnerable. Nevertheless, for the larger part I experience full remission from my symptoms and thus want to share my story with you.
I’ve written the book Stop it You’re Killing Me!: The Untold Suffering of Undiagnosed and Poorly Managed Thyroid Disease in the hopes of helping someone who may be wobbling precariously in the very same sinking boat I spent most of my life bobbing about in!