To look in the mirror and not even recognise yourself is a terrible thing. Illness has taken so much away from me. My work, ability to drive, to walk, to socialise, but to have your very identity stolen is incredibly painful. Is it vanity? Maybe so, but a round face with a big puffy neck and a hump between your shoulders – another disgusting Cushing’s symptom – wasn’t a look I was going for. Everything you did before has changed right down to your choice of clothes. You can’t choose anything when you’re a size 26! It’s always about what you can find that you fit into. As for nice shoes – forget it. You cannot walk in high heels when morbidly obese combined with muscle damage. As if you would be well enough to be able to go anywhere anyway! Of course, I also forget sometimes I can’t stand for long anyway!
Isn’t a woman’s choice of clothes a lot to do with their identity? I think so. Too many things are chipped away and this has a devastating effect on your self-esteem. To be more precise, your self-esteem left. It gave up the day you took a really long look in the mirror. Confidence and self-esteem go hand in hand so that goes out of the window also.
It’s now coming up to four years since the Cushing’s and adrenal insufficiency diagnosis and only a few kilos have come off. Every day for years before and after diagnosis I’ve stood on those scales. Before diagnosis the utter despair as I watched them keep going up and now after diagnosis the crushing blow as you do everything you can to try to make them go down and not much happens. It’s a form of torture.
The day I was diagnosed with Cushing’s it was explained to me how this hideous illness changes the process of how protein and carbohydrate is metabolised and how through no fault of your own it makes you fat. The specialist said there was nothing I could have done to prevent it. It has nothing to do with lifestyle or what you ate. This is particularly true when you look at the pattern of how this illness progresses.
When you start gaining weight the first thing you do is cut down on your food intake and increase exercise. Imagine getting to six years later and you’ve still gained weight. It is now completely out of control. I then took the next step which is pretty common place among cushies before diagnosis, and cut so much out of my diet that I left myself completely weak and low on essential vitamins. You virtually stop eating as you become in a state of confusion and shock. You have lost control over your body. You feel ill and strange and gain weight at the rate of knots. All the Doctors’ you consult tell you off. You have now listened to years and years of Doctor’s telling you you’re eating too much and not exercising enough. You become brainwashed and believe it is true. Somehow this is your own fault. You hate yourself, you cut down even more and exercise even more but the weight gain doesn’t stop.
By the time I was diagnosed I was living on protein shakes and had given myself vitamin deficiencies. Those in turn caused a whole host of problems and anaemia’s just to add to everything else. The Professor in Endocrinology who had finally diagnosed my Cushing’s syndrome told me to just eat normally. Now I do eat normally but am very careful. I have massive hang ups about food now. At least once diagnosed your Doctor’s now stops being so nasty. They all say the same thing “good god, we haven’t heard about Cushing’s since medical school”. My regular Doctor’s almost seemed sorry how they’d all missed the fact I was very ill. Almost, but not quite. Compared to the constant accusations of being an overeating sloth at least now there was some respect.