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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.
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? Unfortunately, not really!
Read my article about why hypothyroidism is classed as a chronic illness, here.
I was diagnosed with autoimmune hypothyroidism (Hashimoto’s Thyroiditis) aged twenty-one, after a five year battle with doctors, going back and forth 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 can hurt 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 can anyone else know how much I’ve gone through, except me?
I tell myself that most people don’t mean for their comments to come across as hurtful or insensitive, but that doesn’t really make it hurt any less.
And whenever I think about the future, when I really am eighty-years-old, it scares me. I have 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? 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 currently set at 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. I suspect that some of you reading this will probably think that 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.
Have you ever head this said to you?
You, Me and Hypothyroidism: When Someone You Love Has Hypothyroidism, a book for those who know someone with hypothyroidism.
You can click on the hyperlinks in the above post to learn more and see references to information given.
Rachel Hill is the highly ranked and multi-award winning thyroid patient advocate, writer, speaker and author behind The Invisible Hypothyroidism. Her thyroid advocacy work includes authoring books, writing articles, blogging and speaking on podcasts, as well as being a board member for The American College of Thyroidology and The WEGO Health Patient Leader Advisory Board. Rachel has worked with The National Academy of Hypothyroidism, The BBC, The Mighty, Yahoo, MSN, ThyroidChange and many more. She is well-recognised as a useful contributor to the thyroid community and has received multiple awards and recognitions for her work and dedication. She has authored two books: ‘Be Your Own Thyroid Advocate‘ and ‘You, Me and Hypothyroidism‘. Rachel is British, but advocates for thyroid patients on a global scale.