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Living with hypothyroidism can take over our lives at times. Some of us get better rather quickly with treatment, whereas others can take months or even years to start feeling better. Treatment is very much individual.
Seeing a friend or family member that was formerly active, bright eyed, switched-on and lively, go through the diagnosis of hypothyroidism and perhaps become less active, more fatigued, brain fogged and not as happy can be incredibly hard. There is likely so much that you want to do for them but feel as if you have no idea how to help.
However, for many, it changes their lives forever. Whether in many major ways or a few, small ways.
So, to those of you who have a friend or family member with hypothyroidism, I imagine it can be frustrating having your once very reliable and sociable friend, now perhaps not-so reliable, not-so available or not-so sociable.
As you read this short list, I ask that you remember that the person you know with hypothyroidism did not ask for this disease, and they are just as frustrated as you are, that it can affect their life so much.
Here are four main things you should keep in mind.
1. We Don’t Like Cancelling on You
Living with thyroid disease can be unpredictable. The thyroid patient in your life may feel well one day and then be struck down the next with a flare up (an increase in thyroid symptoms such as heavy fatigue, muscle aches and pains and brain fog). They may feel quite well when they first agree to certain plans with you, and then a few days before, or on the day itself, become really unwell. In fact, going could make them more unwell.
Many people with hypothyroidism experience flu-like symptoms, and really do try their best to juggle life whilst having a chronic illness. Yet, can be disheartened for needing time to recuperate or look after their health. Please try to understand and in fact, encourage us to rest when you can see that we ought to.
People may think we’re lazy or just not making the effort when we have to cancel plans, but when this is our life, we have no real control over how we feel on that particular day.
If we cancel plans unannounced, it doesn’t mean we don’t want to see you. Talk to us and we’ll arrange another time to catch up!
2. Turning up Unannounced Isn’t a Fun Surprise and Neither Are Last Minute Plans
It might seem odd that, given my explanation of how we may even need to cancel on long standing plans above, that last minute plans aren’t really useful either.
In order to prepare for a social event, meeting or a quick catch up, it can take us days or even weeks of preparation. We may be resting as much as we can before the day so that we’re able to make it as much as possible, but we also often need to plan rest days afterwards to recuperate. Social situations can be draining for us in every single way – emotionally, mentally and physically.
So turning up on our doorstep out the blue, when we haven’t had the chance to prep, get the energy to wash and get dressed or tidy the house, can be anxiety-inducing.
And asking us on Saturday morning if we want to meet for lunch that day likely isn’t great either. Again, we may need to need to prep before.
3. We Can Have up and down Days/Weeks/Months
Hypothyroidism, especially the autoimmune kind (which is what around 90% of us have), can come with flare ups. Sometimes we know the triggers, so we avoid them and are able to limit flare ups to some extent. But we don’t always know what causes them, or we have a crash, where we’ve done too much recently and come to a complete halt, practically sofa-bound.
This means that whilst I was well enough to go to a gig last week, as well as a night out with friends, or I’ve had a month of being really sociable, it doesn’t automatically mean I’m well enough this week or this month, like a regular, healthy person.
You have to treat each day individually where living with thyroid disease is concerned, so don’t think we’re being rude if we turn down your invite so we can rest up, even though you saw we were ‘well enough’ to be out earlier in the week. We have to schedule in rest days or we’ll make ourselves even more ill. We may not be able to make every event we’re invited to so have to figure out which ones we can.
4. We Really Do Appreciate Thoughtful Gestures
Asking us how we are, suggesting we schedule in a phone call catch-up, sending a card or a little something in the post, can really remind us that there are people who do care, when we feel so rubbish and controlled by our health conditions.
As thyroid patients, we may feel like a burden sometimes, or disregarded by friends we don’t get to see as much. Sending things in the post is something I don’t think we do enough of these days, as it’s becoming much less common. But receiving a mystery card, letter or parcel is somewhat magical and knowing someone has thought of you is heartwarming. It’s a simple gesture, but says a lot. I have an article on my website for care package ideas that go down well with hypothyroid patients.
Other thoughtful gestures can include just taking the time to check that we’re OK with a text or phone call. We have a tendency to clam up and not disclose everything we’re going through, but being able to speak about it to someone every once in a while is a healthy release.
What else would you add?
This excerpt is from the book You, Me and Hypothyroidism: When Someone You Love Has Hypothyroidism. A book for those who know someone with hypothyroidism, such as a spouse, family member or friend.
You can click on the hyperlinks in the above post to learn more and see references to information given.
terri ConnellyFebruary 28, 2021 at 3:19 pm
This is excellent.. people tend to stay away
And really don’t understand daily struggles
Shelia KirbyJune 20, 2017 at 8:57 pm
Thank you for this post it describes my condition perfectly
Judith FontaineJune 20, 2017 at 1:27 pm
My daughter has lived with this disease since she was pregnant with her first child 19 years ago. It is a daily struggle for her and it seems that very little people really understand.
Nancy DrakeJune 19, 2017 at 9:43 pm
Thank you so much Rachel for Puttin into words exactly how I feel everyday.
It is definitely 100% me and sometimes I feel like friends and family don’t understand those of us that live with Hypothyroidism everyday..extremely frustrating….