Chronic illness. It’s a term that sounds scary and dramatic to some.
A chronic illness is a condition or disease that is long-lasting and usually lifelong, which includes Hypothyroidism and Hashimoto’s. Having a chronic illness, well two of them actually, I often refer to myself as a ‘Spoonie‘, someone with a limited amount of energy. More info here.
When people ask me what a Spoonie is, and I explain that I have a limited amount of energy that affects my day to day life, so much so that I have to plan my use of ‘spoons‘ i.e. energy, wisely, I often receive a nod of recognition. But I have also been told “You’re too young to have a chronic health condition!” or “You won’t be really ill for years yet.”
Erm. I do have a chronic illness. A few, actually. And I have been really ill!
What has age got to do with it? Does my body care if I’m twenty or eighty? Nope, not really!
I was diagnosed with autoimmune hypothyroidism (Hashimoto’s Thyroiditis) aged twenty-one, after a five year battle with doctors, going back and fourth with more and more unexplained symptoms, until I eventually crashed and they finally thought to test my thyroid. I’d been having symptoms since I was sixteen.
When a person says something like “You’re too young to have a chronic health condition”, it really hurts and I feel disbelieved. I feel belittled. It’s as if they’re saying I’m lying, or it can’t be as bad as it really is. And they have NO idea how bad it can be. How do you know how much I’ve gone through?
I do tell myself that most people don’t mean for their comments to come across as hurtful or insensitive, but that doesn’t make it hurt any less.
And thinking about the future, when I really am eighty years old, scares me. I’ve been really ill at twenty years old, so what on Earth could I be like when I’m a pensioner? Could my condition have progressed? Probably. Will I have developed other, linked conditions? It’s possible. Will those around me know how to medicate me when I’m no longer ‘with it’ enough to ensure I receive adequate treatment, as I’ve had to fight for, for myself so far? It worries me to think about.
I even worry that I won’t have much of a retirement since my state pension retirement age is 67 and I’m concerned I’ll be too ill to enjoy or see much of it by that time. It’s crossed my mind to retire earlier, but really, it’s way too far away to predict or plan. And some of you reading this probably think I’m mad for thinking of this in so much detail, but when you’ve been so chronically unwell at just twenty years old, it’s scary to think of how you’ll be when you get to seventy and all those other things the average seventy year old has or develops, will be on top of what us Spoonies are already battling.
Will I even be well enough to raise a family one day?
No one is guaranteed a long and/or healthy life, and illness does not discriminate based on age. Fact. Don’t be so dismissive.
This post was originally written for The Mighty.
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