Rachel Hill is a writer and advocate who has been living with Hypothyroidism since she was 16 years old. She is the creator of The Invisible Hypothyroidism, an award-winning patient advocacy blog that focuses on helping others by advocating for a better thyroid disease diagnosis and treatment. We asked Rachel to share her story with our app.
Here’s what she shared with us:
What are you most passionate about?
Naturally, I’m quite passionate about advocating for better thyroid disease diagnosis and management for other patients. Going un-diagnosed for so long, living with symptoms that were not necessary, as well as listening to other patients daily in a Facebook support group that I run really hammers home for me the importance of us all needing a voice and someone who can get it out there. [It’s important to share] what it is that we go through and what it is that we want and need [in order] to live a better quality of life. So that is really what I’m passionate about and I do that through writing and through various articles and blogs and informative pieces for not just my own website but other websites as well.
When did you decide to get medical help?
Essentially, I’ve been living with various symptoms since I was 16. I was eventually diagnosed at 21, a couple months before I turned 22, so it was quite a long time to be living with various symptoms [with] no reason or causes they were coming from. These included: unexplained weight gain (despite eating quite healthfully and being quite active with exercise). Poor mental health, depression, and anxiety were very common themes in my life and kept coming around and as well as dry skin, acne, irregular periods, and anything from acid reflux to joint pain and muscle pain and spams. The list is very long. There’s over 300 known symptoms of hypothyroidism.
Who is your greatest source of support?
I’m quite lucky to have another half, a fiancée. He’s very understanding and supportive of my condition and the way that it can impact my life. We have been together since we were 16, so it’s quite rare, and it just means that he has seen me go through the years [with my condition] slowly becoming more real and then getting a bit better and having flare-ups and bumps in the road as well. He’s incredibly supportive.
I also run an online support group, as I’ve also briefly mentioned, and it’s the kind of place that you can turn to not just for advice or maybe wanting links to studies and informative articles but also where you can turn to if you’re having a bad day and you just need someone to say, “yeah, I get you, I’ve been through that as well.” Or just someone to listen really. Online forums and support groups can be incredibly powerful and I’m pleased to say that I run one myself which is a lovely place to be. It’s called the Thyroid Family because we are just like a family.
What’s your advice for others living with Hypothyroidism?
If you’ve just been diagnosed with hypothyroidism and/or Hashimoto’s, which is the most common cause of hypothyroidism, I would definitely suggest that you reach out to other people who have gone through that diagnosis as well, and not just in forums. Maybe [try] support groups and looking for support or people to answer all your questions because these places can be daunting. They can be full of people who are still struggling to get their condition under control and this perhaps isn’t the best environment for you to be going to straight after diagnosis. [You might be] a bit scared and confused.
I would suggest that you look into thyroid advocacy [organizations] and academies for hypothyroidism and related conditions. Also, [look for] bloggers and writers as well. A lot of us, like myself, share what we’ve gone through ourselves and what we’ve learned. [We also share] what we might have done differently and what we wished we would have known sooner and that can be really valuable to someone who has just received that diagnosis and is perhaps a little bit scared, a little bit confused. So, I definitely suggest looking into those as well. If you feel like support groups such as Facebook or the forums might be helpful, definitely have a look at reaching out but I wouldn’t rely on them solely.
Why share your story?
My main message in all that I do in online writing and advocacy work is to promote for thyroid patients to become their own advocate. It’s a very misunderstood condition even among doctors and medical professionals. They don’t always understand just how much it can impact our lives and the type of misunderstandings and things that we have to go through in the world. It’s not just a condition that leads to weight gain, it’s not an excuse for being overweight, it’s very legitimate and the amount of symptoms and issues that we have to put up with in our day-to-day lives [range from] physical to mental and emotional as well.
I would just promote that everyone become their own thyroid advocate, and in this I mean learn how to read your own lab tests and test results. Learn what you should be having tested and what levels you should be aiming for. Learn what is and isn’t normal and what is part in parcel of having thyroid disease. Learn how you can implement things to help manage your own condition instead of solely relying on doctors, I mean, in this day and age especially here in the UK doctors are pushed for time, they don’t have as much money as they ideally would to treat each patient, so that 10-15 minutes that you get in an appointment just isn’t enough to go through everything that you want to [including looking] at everything with as much detail as is ideal. So, I would really just suggest, and I always promote the idea, to become your own advocate and learn what things you can implement yourself and what you can do to just make a better quality for your life as well. Don’t entirely rely on others.