We are not victims (of hypothyroidism)

August 8, 2017

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*Update: A thoughtful reader on Twitter (Clutter @Clutter2) responded to this article with the following comment, which makes a valid and necessary point:

“Many of us are, have been, and will be victims of our respective healthcare systems, which restrict the replacement hormone we are allowed.”

And there are so many of us (myself included) who have a legitimate complaint in this regard. I still don’t like to think of myself as a victim, though, because it feels as though I’m saying I can’t do anything to improve my situation — and I refuse to accept that. 

But it’s a different story when it’s someone I care about who is suffering at the hands of incompetent or indifferent doctors and their one-size-fits-all approach to thyroid dysfunction (or something else). The commenter told me what she meant by the word “victim,” and I’m including it here:

“I use victim in the sense that the proposed withdrawal by NHS of the T3 added to T4 will cause a decline in my health without my control. Similarly, I believe patients switched from NDT to Levothyroxine by new health care providers are victims of their health care provider.”

It’s a valid point, and I should have acknowledged in the following article that there are different ways to be a victim. 

I used it in the sense that there’s nothing we can do to improve our situation — that we can’t have our revenge on our inadequate health care providers by getting better and thriving in spite of their incompetence or arrogant disregard. 

She used it in the sense that a wrong has been done to many with thyroid disease by depriving them of solutions that truly help them feel better; and while it may not completely destroy our ability to thrive, it has a dramatic and negative effect on our health and well-being. 

To me, being a victim means having to wait for someone else to help me feel better and do better. When I was old enough and able to do something myself that could help me feel better, I ran from the word “victim” as though it were a jailer bent on catching me and returning me to my cell.

How would I react, though, if my clinic and current health care provider suddenly refused to adjust my dosage based on my insistence that my TSH value needs to be at the low end of their “normal” range? Most likely, I would change clinics. I would have to. I would call around, and I wouldn’t waste time trying to see an endocrinologist, since the one I talked to most recently recommended the one-size-fits-all treatment. I would do everything I could to find a doctor who would work with me on my thyroid replacement and its dosage. 

But there are many for whom this is an uphill battle — after a heavy rain — and wearing roller skates. So, do we call them victims of their healthcare providers, or do we simply say they are being victimized by their healthcare providers. Is there a difference? The first, for me, seems to make victimhood their identity, while the second makes the healthcare providers out to be the victimizers, without firmly stamping their patients with the word “victim.”

Maybe I shouldn’t make the distinction, but I don’t want to ever see myself as a victim of anyone or anything. So, I’ll admit this is a personal thing for me and a matter of pride (which can easily be brought low), and maybe I shouldn’t have given this post the title “We are not victims.”

I know I’m not alone in refusing to see myself as one, but it’s not wrong to acknowledge the difficult and painful position many are in as a result of indifferent health care. I didn’t mean for my title to be offensive or inflammatory. It was meant to be a sort of rallying cry, but I failed to take into account that others see the word “victim” differently — with less personal baggage attached.

Sometimes, I don’t know what’s wrong with a blog post until after I publish it. 

And with that, you’re welcome to read the article below — and to share your thoughts in the comments. 

On Saturday, August 5th, my article — “How is this normal? Diagnosed with hypothyroidism at age five” — was published on HypothyroidMom.com. And I reveled in sharing that post and seeing how many people liked and shared it. My own blog doesn’t get anything near that kind of traffic, so watching those numbers climb was more exciting than some of my book launches. 

Hypothyroid Mom TwitterI also enjoyed reading many of the comments on the HypothyroidMom Facebook page, as well as some on Twitter. For the most part, I’m encouraged by so many reminders that I’m not alone — that there are many of us struggling with persistent hypothyroid symptoms — and many who grew up with them.

A few of the comments I saw on social media suggested I was “dealt a shitty hand.” I disagree (though I know it was kindly meant), and I’m writing this to make something clear.

We are not victims. We have rough days, yes — but for many of us, the good stuff still outweighs the bad.

I grew up in a loving family, and I now have a loving husband and four great kids. We have a roof over our heads and food in the fridge and cupboards. We even have working appliances: oven, washer & dryer, fridge and freezer — and now even central AC! We may not always have these things, but every day is a gift and a calling. 

I know others with far more serious health problems, including those with PKD that has progressed farther than mine has (my latest lab numbers were good). I wrote that article over a year ago, and my lab numbers improved shortly afterward. I wish I could remove that part of the article, to be honest, but I can’t. What I can do is provide this small update. 

I’m not writing about the rough parts of growing up hypothyroid to arouse pity. I don’t think my health challenges (physical, mental, and emotional) were so great that they deserve exceptional attention. Many have gone through the same things, and many have gone through worse.

So, why even write about the challenges of growing up with hypothyroidism? Because I know I’m not alone, and I want others who’ve lived with the symptoms of thyroid disease to know they’re not alone — and that they have a right to demand better medical treatment.

They have a right to insist on more comprehensive lab testing and a chance to try something other than the standard T4-only therapy. They have a right to know and to see the results of their lab tests — the actual numbers, not just a “Your numbers are normal, so your dosage will remain the same. Come back in six months (or a year), and we’ll check again.” Any doctor who refuses to share the numerical results of a patient’s thyroid tests should be fired (by their patients).

The same goes for any doctor who won’t listen or take you seriously if you say, “But I still feel terrible. I have no energy, and I’m experiencing other hypothyroid symptoms besides.” Because many of us do, even with “normal” TSH values.

I re-read my article (which I’d written over a year ago) and honestly wished I could delete some of it. It was a long article, and it could have been shorter and more helpful. I shared what I did because I know I’m not the only one diagnosed as a child and who has grown up with symptoms attributed to other things — by doctors or other people who don’t know just how much of our bodily functions are affected by the thyroid gland.

Yes, there were some rough times but nothing that makes me think I have it worse than most or even worse than some. Because I don’t know what other people are going through (inside and outside), so I can’t really compare my experiences with theirs.

Many others have suffered much more than I have. For the most part, my life has been and continues to be a comfortable one.

It gets less comfortable when I publish something about a painful time in my life or about something that bothers me, and there’s always the risk that someone will read it and say things like “Why even write about this stuff, as if what you’ve gone through is anything worth writing about? Do you want people to feel sorry for you?”Weeping Angels Doctor Who BBC

Honestly, while I do want to dispel the idea that my life is all wine and rainbows, I don’t want anyone’s pity. It’s one thing for someone who’s going through some of the same things to commiserate with me and to thank me for sharing what I did, because it made her feel less alone (and it works both ways).

It’s a completely different thing when someone responds with words like, “Oh, you poor thing! I had no idea your life has been so hard!” For one thing, I’m waiting for the punchline or the critical comment at the end, saying something like, “Boo hoo! Get over yourself already and stop dwelling on what you’ve suffered in the past. Nobody cares.”

For another thing, I don’t see myself as “poor thing” or as a victim. I see myself as a devoted and protective wife and mother, a prolific writer, and someone who makes things happen.

I don’t focus on what I’ve suffered, because in the big picture, my sufferings don’t amount to much. I focus on creating a legacy for my kids and for others. I can make myself healthier, and I don’t let the doctors talk me into settling for the easy (for them) but ineffective treatment options, though (for now), I’m stuck with the care we get within our network and with the thyroid supplement our insurance will help us buy — which is generic levothyroxine.

It’s not perfect, but I don’t need perfect. 

I get comprehensive thyroid labs, and if my TSH is toward the middle of their “normal” range, I insist on a higher dosage (especially if I know I’m experiencing more hypothyroid symptoms), because I’ve noticed I feel much better when my TSH value is at the low end of the so-called “normal range.” 

I haven’t even tried natural desiccated thyroid (NDT), yet, because our current clinic won’t prescribe it and won’t even prescribe supplemental T3, and we’re not in a financial position to pay for a functional medicine doctor and for prescriptions that our insurance won’t cover. 

My health is not limited by our budget or by our clinic’s reductive approach to thyroid care, though. I know how to help myself feel better and how to improve my lab numbers, and I don’t wait for anyone’s permission (or orders) to do so. I refuse to let my health and well-being depend on someone else (other than God, who can do as He likes with me). Life Means Struggle

I’ve been depressed (though I’m not now), and I still get anxious, but I don’t see myself as a victim of mental illness or of a chemical imbalance. I see myself as someone who struggles with a lot of the same things other humans struggle with. If some of my struggles are different, it’s because we’re not all the same, and something that’s a challenge for me might be easy for someone else, and vice-versa.

I’m not a victim because my thyroid gland is smaller and doesn’t produce as much as it should. I’m not a victim of depression or anxiety. I’ve been through things that some haven’t, and vice-versa. I have gifts, and I have crosses — and some are both. Life is messy, hard, and beautiful.

I’ve found I’m not great at waiting for people’s permission or approval to do things I want to do (like writing and self-publishing my own books). It could just be my general lack of patience, or it could just be that I don’t expect that permission or approval to come — at all or in a timely manner — and I’m not getting any younger.  I’ve also found, though, that I need to break things down into manageable steps (i.e., things I can get done in a much shorter block of time), so I’ve learned to do that.

When something I want to do requires me to get someone’s permission, cooperation, or approval, I then have to want it badly enough to deal with other people’s shit. In other words, I have to want it a LOT! 

It’s an energy economy thing, and energy is something a lot of people with thyroid/endocrine issues do NOT take for granted.

When I saw my driver’s license as something that I would definitely need in order to get around, I finally wanted it badly enough to do what I needed to do to get it. And when I decided I was going to finally write and self-publish my first book last summer (2016), I saw Self-Publishing School as something that was worth the expense in order to help me reach that goal (by providing a step-by-step process devised by someone who had already written and published books of his own).

What about you? What is something you wanted badly enough to go after and what did you do to get it? (I hope you’ll tell me in the comments below.)

Folks with thyroid disease — or with another health condition that affects them in a variety of ways — know that sometimes we have a harder time than usual getting out (and staying out) of bed and getting things done. And it’s important to have at least one person in your life that gets that and doesn’t chide you for it. It doesn’t help when some folks assume we’re just being lazy or that we don’t care enough about something or someone to “just shake it off and get moving.”

But our thyroid issues don’t make us victims — just as someone else’s lack of health issues doesn’t make him a stronger or better person.

Those with health problems shouldn’t be made to feel weaker or less lovable, just as those without health problems shouldn’t be automatically discounted or dismissed as folks who “just don’t get it.”

I should clarify that we aren’t victims unless we’re unable to do anything to improve our situation or alleviate our suffering. We may be victims as young children who don’t understand our suffering and how to stop it or to get the help we need.

But at some point, as we grow older, we learn ways of adapting to our circumstances and improving our situation. We stop being victims and become capable (and hopefully willing) agents of change.

We no longer have to wait for someone else to understand what’s going on inside us and to do something to help us feel better. We learn to help ourselves feel better. And we (hopefully) help others to do the same. 

Sometimes, though, that capability is taken from us, and that can be one of the heaviest crosses to bear. It’s never easy to see a child suffering, but to see someone once strong brought low is no less painful to witness (especially if it’s someone we love). I don’t mean to criticize those who are genuinely at the mercy of others; I don’t see them as weak or as lesser beings. In fact, I think it would take more real strength to put up with that than I’ve ever had.

The word victim isn’t a dirty word, but it is overused — and claimed by those who can and should do more to help themselves and others. The real victims are those who need the voices and actions of those who aren’t. Our non-victimhood implies a responsibility toward them, out of love for them and for the One who created all of us. Today, I am not a victim, but tomorrow I might be. 

Do you disagree or have anything to add? What does the word “victim” mean to you? I’d appreciate if you’d share in the comments below — or you can reach out to me on Facebook or Twitter. Have a great rest of your week!

 

 

 

By Sarah Lentz

Writing and designing book covers are two of Sarah Lentz's favorite things. She lives in Minnesota with her husband, their four kids, and two messy but adorable guinea pigs.

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