Before I was diagnosed with Cushing’s Disease, I had a lot of days where I felt incredibly sick, scared, anxious, depressed. A lot of people always said, “It’s all in your head”. Doctors, family, friends, and co-workers.
It really was in my head. What was in my head exactly? A non-malignant tumour on my pituitary gland – as deadly as a cancerous one.
Anyone who has Cushing’s Disease, whether it be caused by a pituitary tumour, adrenal tumour or from use of steroid medications (i.e., inhalers), know what it’s like to be told we’re just making all of our symptoms up in our head. It’s beyond frustrating, especially if you know you’re a driven person and hate to be sick but have to stay home on days where you’d rather be out doing things.
This disease takes a MAJOR psychological toll on us all. During the disease and after surgery. Personally, I had been suffering from anxiety/depressive episodes since I was 12 years old so I just assumed it was because it was the way I was wired. But it was much more than that. After surgery though, my mind went to pretty dark places. I had moments of pure panic as well. After speaking to other Cushing’s sufferers and survivors, a lot of us shared that same psychological toll.
At one point or another, we all dealt with major anxiety and depression. Some of us dealt with it during our battle, some of us dealt with it more after surgery and some had it go away right after surgery – everyone’s experience is different.
It’s easy for those around us to diminish how we are feeling psychologically because you can’t physically see it. That’s why it is so important to discuss what we are feeling and create that awareness. The more we hide it, the worse it is for us. Personally, I find that part of remission is letting go of that “shame” we carry (a lot of us carry that feeling even though we shouldn’t – NONE of this is our fault), and just being honest with ourselves and those around us about how we are feeling physically and mentally. It’s the only way we will be able to get others to understand the psychological aspect behind it all.
Behind every severe disease comes a battle with the mental along with the physical. A lot of people don’t realize it because not everyone is empathetic enough to put themselves in the other person’s shoes. If you’re a Cushing’s sufferer or survivor, what do you wish people knew about the psychological aspect of dealing with the disease pre- and post-operation?
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