Digging deep - Depression, anxiety and suicide.

I remember after my father died unexpected, people wanted assurances his death wasn't a suicide. It was accidental, but as a 13 year old girl who had just lost her father, getting those questions from family friends and acquaintances really struck me as odd. As if it was our job as his mourning family to spread that specific news? As if that would somehow change everything? Why did they feel the need to know, or even think it was okay to ask?  I don't have the answers, but it still strikes me as cold and wrong.

I have since lost a loved one to suicide. At the time we were both fully-immersed members of a religion that basically equated such acts with murder. I knew in my heart even then that such a stance was devoid of empathy, charity, and love. I don't believe suicide is a positive choice by any means...I know well the added sorrow, questions, and burden it places upon those left behind because I have lived it. I don't know how I survived his death, frankly. But I also don't think of myself as stronger or less "selfish" than him -what horribly judgmental and arrogant thoughts.  Instead, I choose empathy. I recognize those who take their own lives as people just as real, strong, fallible, complex and human as myself and I ask, what would it take to make me cross that line?  Where death becomes more of a gift to myself and to my loved ones, so much so that it overpowers the pain. I think of the amount of physical, emotional and mental suffering I have endured, and I am in awe at their strength. I am grateful I haven't been pushed to that extreme. I can scarcely imagine what amount of pain, haplessness and hopelessness they felt, which far exceeded any I have known. I ache at the thought that they suffered so much and I pray death has truly set them free.

We lost a young woman with Cushing's to suicide in 2014. There are rumors now that another recent loss was suicide as well. In my mind, regardless of what the exact cause was, Cushing's is at fault.  Cushing's led them to their deaths just as surely as if it had struck the death blow itself. If that is hard for you to fathom, then please allow me to educate you briefly on this dastardly, "most morbid of diseases" and why I feel the way I do.

Last weekend I attended the Adrenal Insufficiency United (AIU) conference in Kansas City.  While there I had the privilege to again hear Kyle Gillett, PhD, LMFT speak about mental health with regards to chronic illness.  He shared some telling statistics gleaned from studies:

You'll have to excuse my poor-quality cell phone photo.  But can you see that first line?  That's another blog post all-together (must remember, must remember). But do you see what comes after that?  The statistical risk for depression and anxiety in the overall population are 9.5% and 18.1% respectively.  Chronic illness' risk for mental illness is 28%.  In Cushing's?  It rises to 50-90% risk for depression and up to 79% risk for anxiety. My guess is the overall risk of mental illness in Cushing's is 100%.  He did share some statistics that showed those numbers dropping over time in people in remission.  But back to those numbers.  Why is the incidence SO high in Cushing's?  That could be a very long answer.  Lack of understanding and support from family, friends, even (and especially) doctors and health care professionals.  Ostricism, judgment, blame, lack of restful sleep, muscle loss, extreme fatigue, on and on and on.  But, I'll share another poor quality photo in the hopes you can make out more than I can of what psychiatric symptoms Cushing's patients experienced.  I SWEAR one of those says "Dragons" and I am a bit miffed I was left out of that loop...

(As an aside, while it says the study was quite small, please note ALL studies on this rare population are small...to the point they have to keep expanding their inclusion criteria to get any useful, measurable data at all.  We are not only rare but also extremely diverse.)

So, that's quite a lot of issues, and I personally don't think it even begins to cover the gamut of symptoms we truly experience. "Increased Fatigue" was universal, which is big, but another limitation of those clinical words is that they don't give any understanding of the depth and breadth of what that means in real life, in real people.  So to help with that, I am going to discuss another study I've mentioned in posts past, that compared "Health Related Quality of Life" between those who had Cushing's Disease, Multiple Sclerosis, and those who had Cancer and were undergoing chemotherapy.  As I said in those posts, deadly and debilitating diseases are all crap and I don't care to differentiate which smells better.  BUT, while many can't relate to Cushing's and what that entails, Cancer and chemotherapy are far more universally understood and recognized, so by comparing the two hopefully I can help you get a more tangible idea of the effect Cushing's has on a person's health and quality of life.  So, do me a favor and think of what you know of cancer.  Think of what you know of chemo.  Picture in your mind the toll it has on someone physically, mentally, and emotionally. It is hard. It is cruel. The disease AND treatment wreaks havoc on your body, while simultaneously wreaking havoc on your mind and emotions. 

Now consider that Cushing's HRQOL actually scored lower than that (though higher than that of MS). Does that help give some perspective? Now imagine going through all of that for years while your friends, family, doctors, acquaintances and strangers not only don't offer support or help, but actually criticize and blame you for it all, deny your experiences, and turn you away.  Imagine finally getting answers and a diagnosis, going through treatment (for me, brain surgery -no small thing), and spending roughly a year or more in recovery (best case scenario).  Those same people expect everything to be normal a few weeks after surgery, when you try to explain their expectations are wrong, they call you "negative" and suggest you're wanting a bad outcome.  When, inevitably, their false expectations are not realized, they react just as before...withdrawing support, adding blame. 

Now, what if it wasn't an ideal outcome (it rarely is), and you either weren't cured and have to go through the whole process of diagnosis and treatment again (this time at even greater risk), the treatment itself left you with a debilitating and life-threatening illness such as Adrenal Insufficiency or Hypopituitarism (trading a deadly and untreatable disease for a deadly yet manageable one), or you went into remission and went through all the work of recovery only for it to return a few years later.  And yet still, that's the response you receive from those around you.  It is heartbreaking.

"Cushies," as we call ourselves, are reporting feeling anger, guilt, shame, and rejection. Shocking?  Not so much. Statistically, 1/4 of those in remission at a year post-op STILL suffer from depression.  That is still more than double the rate in the overall population.  Imagine what the rate is for those not in remission, or in remission but with a new life-long disease replacing it? 

Beyond the emotional response to all of what we are going through, there is an actual, physical, biochemical reason we are prone to mental illness.  Everyone is familiar to some extent with the labile emotions that come with puberty, PMS or  pregnancy, so it shouldn't be a stretch to realize that fluctuating hormones can have a very real effect upon our emotions. To paraphrase Dr. Gillett, "They play an important part in the regulation of our moods, impacting how neurotransmitters work, and having a direct impact on psychological and emotional function."

Dr. Gillett then went on to discuss trauma and Post Traumatic Stress Disorder (PTSD).  He stated:

Stressors + Powerlessness = Trauma

He explained that minor stressors can have the same effect on the brain as major ones, that the brain's "Fight, Flight or Freeze" response is still triggered, as the brain doesn't differentiate quality/quantity well in the moment.  So, especially over time, repeated small triggers (even emotional rejection, minor physical pain such as a blood draw, or the stress of having a doctor's appointment) to that part of the brain can lead to PTSD just as much as a single, horrifying event can. That it in effect "trains" our brain to respond to stressors as if we are in danger, strengthening those neural pathways till the response is almost automatic, and leading to symptoms of PTSD.  I can personally attest that this is true, and have discussed it in a bit more detail in previous posts as well.  IF you are experiencing this, please know there are some methods that have proven effective to start changing this pattern, and rewiring your brain to help lessen that traumatic response...Therapies such as Dialectical Behavior Therapy and Eye movement Desensitization and Reprocessing, or Cognitive Behavioral Therapy to name just a few.  He did state it is important to find someone with experience in treating trauma, but that the number one factor that influenced whether therapy was successful was the relationship you have with your therapist, not the specific methods or even specific types/levels of experience they have...it's whether you trust them and feel comfortable with them.

So, lets go back again and imagine all those physical symptoms someone with Cushing's is experiencing, and the mental and emotional toll those alone take. Imagine all the emotions. Imagine being broke from all the medical costs. Imagine the sheer amount of stressors and feelings overwhelming you, never giving you a break. Imagine it hitting your mind repeatedly as actual trauma. Is it really so hard to understand a desire to end that suffering?  Regardless of how much a family loves and supports someone through all this, can you comprehend them feeling they are a burden on their family?  Can you understand now, why I would blame Cushing's regardless?

Damn Cushing's.

Damn it for what it does to us and to those we love.

If you are feeling overwhelmed or desperate, please reach out. If you don't feel you can seek a professional, there are SO many of us online, in facebook groups and on web pages, that truly do empathize, understand what you're going through, and want to help in whatever way we can. It isn't your fault. This disease may have taken much, but it cannot take your worth. 

You are not alone.