I’d wanted to go next with a bio I wrote for a nationally published newsletter for Cushing’s suffers, but I’m waiting on permission since I don’t own the copyright. However, a conversation some of us Cushies are having online got me thinking on another topic, one which is touchy for us. Here is a family picture taken some years ago of me and some of my family:
I’m not hard to spot, I’m the fat one. At the time I weighed around 390 to 400lbs. I know, you’re probably saying “My god that’s a really fat man! How did he let himself get in that kind of shape?” I didn’t. That’s what years of Cushing’s Syndrome does to its victims. And for the ones who have it in the extreme it doesn’t take all that long to do it. Now you’re wondering if we can’t control our appetite and that’s only natural. So I’m going to discuss that facet of Cushie life and lay it all bare for you that you may understand us and our problems a little more.
First off please understand that if we eat normally, and most of us do most or even all of the time, cushies will still gain weight, lots of weight. That’s because cortisols encourage the storage of food as fat. In fact it is the reason why women gain fat during pregnancy they enter a cushingoid state during pregnancy which goes away after birth. I know of a lady who is a runner. She started gaining weight out of the blue and decided to simply go on a diet and increase the distance of she ran. She still kept gaining weight. She’s a Registered nurse and knew that simply didn’t happen unless something serious was wrong. So she went to the doctors and didn’t take no for an answer until they found the problem. She had pituitary Cushing’s.
Surgery cured her Cushing’s, but she didn’t stop there. She started one of the first organizations to bring cushies together and start pushing for better research into our disease.
However, that isn’t all there is to how we gain weight. Among the things high cortisols do are they ramp up the appetite. We don’t like to admit it, but there it is. But it’s not even as simple as that. There is no such thing in the human body as constant hormone levels. Every Cushie is cyclical to some extent. It just that the “Florid” cushies’ (that’s a term I just saw today and may be the new one for what we call full-blown) cycle is always in the higher ranges and never enters lows anything like normal. Because of societal pressures over our weight and appetites most of us fight our appetites and win that game when they are on the low side. Some few win it all the time and my hat is off to them!
However, when the cortisol goes up we get hungry, insanely hungry. And some of us just can’t help eating, even in the face of familial criticism. The thing to understand is that it isn’t a mental thing, it is an organic imperative like that sudden itch couples get and scratching it is not anywhere near as satisfying. I have stuffed myself until I couldn’t hold another bite and still had that overwhelming hunger driving me up the walls. I’ve learned to indulge only a little, and then grit my teeth and suffer. Most cushies do.
You see society and family shame us for our size. And when the appetite goes up the shame is heaped on in even larger measure. And we feel the shame very keenly. So we are touchy on the subject. We wish family and friends were more understanding instead of critical. We’re tired of hearing them and doctors tell us it’s all in our heads and we just need to exercise some discipline. We need family to stop throwing it up in our faces that we “aren’t aware of how much we eat.” We are when we do and we’re ashamed of it. And saddest of all we need encouragement and understanding because, guess what, most of us diet when the hunger isn’t on us to try to undo the damage. And almost all of us fight it anyway, even when we’re losing that particular battle.
So what can family do? Be understanding and supportive. Try to have the sorts of food around which don’t go to fat so easily, whichever ones your Cushie family member may like. Listen to them and if their hunger is on the rise provide that kind of snacking in as healthy an amount as you can compromise on. But listening is the most important thing and giving them the love they need to find the strength will go much further in helping them lessen the damage a drive will cause and such love will do much to keep your relationships strong and help them have a life worth living.
It is hard being a zebra after all. And we need our friends and family more than ever until we each find our own cure.