Health

The Blessings I Found In My Chronic Illness – Invisible Illness

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Dena Standley

How my physical health deterioration helped save my mental health

Photo by Allie Smith on Unsplash

I will not bore you with all the details but the decline in my health was a slow and steady progression that is often seen with chronic illness. I was completely healthy except for having some disc in my neck in danger of compressing my spinal cord. It needed a fairly invasive surgical procedure. I was told to expect 1–2 nights in the hospital for pain control and then 6 weeks or so for initial recovery. After that, it would be months before the fusion was healed, so I would still need to take it easy during that time.

When I woke up from surgery, I knew that something was wrong. I just had a sense of things being off. What my poor husband ended up having to explain to me over and over again, as the drugs wouldn’t let me write to me long term memory, was that when I woke up it was almost three days after the surgery. I had been intubated for that entire time as something happened with my heart during the surgery. I had an ejection fraction of 17%. I was in ICU. The prognosis was grim. There were no real answers about what had gone wrong. When we asked about what the future held the heart specialist put it very bluntly. 1/3 get better, 1/3 stay the same and 1/3 die. To this day I cannot adequately put into words what it was like trying to process that.

I left the hospital 10 days later. By God’s grace, I was one of the 1/3 who slowly started to get better. As time moved on, it became clear there was still something wrong though. Various doctors just had no clue and I finally started to get the inevitable vibe of “maybe it is all in my head.” I started to believe that myself.

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My BP stayed extremely low. I felt weak and fatigued a lot. Finally, after a wonderful family vacation over Christmas of 2015, I crashed. I lost the entire month of January to a fog of exhaustion and the inability to stay awake. I also lost over 20 pounds in that month without trying to. The weight loss was what had my doctors finally take it seriously. The diagnosis of depression was tossed around but it could not explain my symptoms like frighteningly low blood pressure.

My cardiologist had a light bulb moment and ordered the testing for adrenal insufficiency. It is a very rare disorder not to be confused with adrenal fatigue. In his words “in medicine, they teach us that when we hear hoofbeats think horses, not zebras. But, we are not chasing unicorns.”

The test was extremely conclusive. I had adrenal insufficiency. It isn’t a simple disease to manage, but daily steroids replace the cortisol my body can no longer make. An adrenal crisis can be lethal but my family and I know the signs to watch out for and some things I can do to help avoid symptom flares. I wear a medic alert bracelet because if I was unconscious for any reason I would need immediate emergency steroids. I carry around a steroid injection. AI causes low cortisol and low cortisol can cause symptoms of sluggish thinking, disorientation and even confusion and hallucinations. It is not hard to see why it is often confused with a mental health condition.

It is autoimmune in nature and autoimmune issues tend to lead to other autoimmune problems. A year after being diagnosed with AI, I was diagnosed with Sick Sinus Syndrome (SSS). That means that my heart’s natural pacemaker, the sinus node, is “sick.” I needed a pacemaker to treat extreme bradycardia.

Okay, believe it or not, that is the short story. It was not easy finding a diagnosis, learning to accept new limitations, and my family and I went through a lot of trauma around trying to get to the point where I am healthy enough to function again. Too much of my life still revolves around doing what I can to stay healthy. That, however, isn’t the purpose of this story. This is a story about the unexpected blessings I have found in having a chronic illness (or two).

Chronic illness stripped away my emotional defenses. I was vulnerable and I needed help. I don’t do either of those things well. I am the caretaker. I tried to bluff and lie my way through it. I was “fine.” I tried to keep doing life the same way I had always done it. I failed.

I was finally forced to accept the fact that I couldn’t care for my family the way I was used to. Not only that, but the tables were turned. They had to help take care of me. I hated that. I fought and railed against it but it did not change anything. So, slowly, I came to accept it. I wish I could say I accepted it with grace and dignity, but that would be a lie. I was mad. I resented all the things I could not do. I resented the help I sometimes needed to get through the day.

Then my mother-in-law was diagnosed with terminal cancer. She was a lot like me in that she was a caretaker and one of her hardest struggles was letting us take care of her. Sitting outside with her one morning she said something about how much she hated us “having to take care of her.” I told her, in absolute honesty, that it was not a burden but a privilege. After all that she had done for us, being able to repay that in some small way was a gift. Cue lightning bolt. I meant what I said with every fiber of my being. So, why was I so sure that my family didn’t feel the same way about me?

Blessing number one was discovering that it was okay to feel vulnerable from time to time. I needed my husband in a way I never had before. As soon as I was ready to accept that, we became partners in this journey. I no longer felt as alone and he no longer felt as helpless.

Chronic illness has increased my compassion immensely. As much as I do not like that part of myself, I used to be much more judgmental. I often looked at things as very black and white. I thought that if you just worked hard enough, tried long enough and did what was right, you would eventually be rewarded with the outcome you desired. Just typing that makes me cringe. How flawed my thinking was back then. Life happens and we are not in control of how it impacts us. Sure, we chose what we make of what is handed to us. Now, whether it is a physical illness, mental health issue or a life circumstance like divorce or homelessness, I have an entirely new level of compassion.

Chronic illness also taught me to be still. That may not seem like a blessing at first glance, but it is. Stillness is where I have rediscovered so many things about myself that were lost to the noise and chaos of busyness. I love to write. Long before I wrote for a paycheck or an audience, I wrote for myself. Somewhere in the craziness of life that simple pleasure had slipped away. The times when my chronic illness demands that my body rest has freed my mind to explore new and amazing places.

Chronic illness has taught me how exceedingly blessed I am. I have a family that I love beyond measure and they love me in return. I have friends who have become family. I have things that I am passionate about and the freedom to explore those passions.

Most of all, my chronic illness has taught me to take less for granted. I survived when many don’t. I was gifted with a wake-up call that my blessings were not the fruits of my hard work. They were simply, well, blessings. I won’t pretend like I wake up every day immensely thankful to be alive. I should. We all should. But that isn’t reality.

Some days I wake up miserable and in pain. Other days I just wake up annoyed, anxious, or frustrated with all the things that need to be done. However, I still have these glorious moments when I realize the power of the moment I am living in and it takes my breath away. It may be something big, like standing before a stunning vista or watching an amazing sunrise, or something small like listening to my kids’ laugh or argue in the next room. Whatever phenomenon brings about these feelings, for a brief period of time, I am awed and humbled to experience that moment.

My illness took plenty of things away. I may write a blog about that someday. Today, I am choosing to be thankful for all it has given me.

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