What Can We Do to Change How Hypothyroidism Is Perceived?
Isn’t that a question. I’ve made it no secret that as hypothyroid patients, we often feel put down, not listened to and belittled. So what should we do to change that?
I set up my blog and started writing articles for The Mighty to scream and shout about my own experiences with hypothyroidism, and then, when I got a diagnosis for it, adrenal fatigue too. There, I started sharing what I was learning along the way, putting together blogs referencing books and other sites. I also write about my personal experiences. All of these things I hope help others and raise awareness.
We can make those around us aware of what we have to put up with by sharing articles such as my open letter with them. We should be honest with our work colleagues about how it can affect us with work or our ability to complete tasks, too. We should aim to make our family aware because we may well need their help at times when it gets tough. We should not feel ashamed about having a condition we are not at fault for. We should not feel ashamed to ask for help sometimes.
In my articles and blogs, I share what has worked for me, what can work for others and what frustrates me about living with thyroid disorders. We can all do this. Whether it’s posting or sharing things to Facebook, Twitter or Instagram, we can all make those around us and in our lives, more aware. You don’t have to blog or write articles yourself, but you can share them. You can show your passion for better awareness, understanding and treatment of thyroid conditions that way. And maybe, just maybe, we’ll start to get somewhere. If you read a good article, blog, website, book etc. DO share it with those in your life.
We should ask friends and family for help when we need it, and explain that if we can’t meet their expectations with some things, then it isn’t our fault. We need to learn to put our foot down too.
If we suspect that friends or family members could also have thyroid problems, then we should encourage them to get properly tested (not just TSH) and assist them with getting better. It’s estimated that 60% of people with a thyroid problem don’t even know they have it.
We can fundraise where possible. There are quite a few thyroid charities out there that need our support. I chose Thyroid UK to fundraise for, as their beliefs are very much aligned with my own. They support the use of T3 and NDT and not just Levothyroxine, and they support full thyroid panels being done, and not just TSH. They push for us all to be tested for D and B12, as well as Iron and Ferritin and many other vitamins and they acknowledge the many, many symptoms hypothyroidism can cause and the conditions linked to it going inadequately treated. They are a small charity and money raised will go towards their campaigns for us to be heard, their new website which is much needed to better deliver invaluable information about hypothyroidism, and their research and studies, which last year for example, proved that only 7% get total relief from Levo. By working together, we have a better chance of making change and raising more awareness.
Wanting to spread awareness among fellow patients, I have also set up an online group to help and educate others about hypothyroidism and related problems, and encourage them to be their own thyroid advocate. We must empower each other and show support when no one else does.
We can also get involved within the community by setting up face to face groups and meetings, to support those with thyroid disease, or by applying to be a member of a CRG in the NHS, for example. I’ve done this, and although they didn’t like my thoughts on my application form, I’m still shouting on behalf of us suffering!
We can also share what we learn with our doctors and endocrinologists, so that it can hopefully help other patients that they see too. Sharing books with them can be helpful. Just make sure not to do it in an undermining way; a lot of doctors won’t take kindly to this. Ask them to please consider reading some suggestions and listening to your personal experiences. We should share with them what has been helping us and what hasn’t, so that they can become more aware and give us better treatment.
Whichever way we choose to raise awareness of hypothyroidism to encourage better treatment and testing, you can be sure that it isn’t wasted. It won’t be easy to raise awareness and recognition, but every snowball starts with a single snow flake.
You can click on the hyperlinks in the above post to learn more and see references to information given.
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I also run a group for the spouses, partners and other halves of hypothyroid patients, called Hypothyroid Patients Other Halves – Support & Advice Group. This is for the other halves only and not patients.