When you’re diagnosed with a disease, especially as an adult, you certainly go through the five steps – denial, anger, bargaining, depression, and finally acceptance. But what happens when you have to go through those steps so many times that you get stuck in depression?
I’ve had many opportunities to move through these steps.
Polycystic Ovarian Syndrome
In 1998, I was diagnosed with PCOS. The Dr who diagnosed me knew very little of the disease. He simply told me I would never be able to have kids and prescribed birth control pills.
After college, I began seeing an endocrinologist. She told me I shouldn’t be on birth control pills, but rather a diabetic medication called metformin. The metformin made me incredibly sick, so I stopped taking it. I had already passed the denial stage and moved to anger. This good little Christian girl became very sexually active; granted, it was only two guys, but I let them use me. I didn’t care if we had a relationship, and I didn’t care that they were verbally abusive. I was just mad about my body so I thought by abusing it, I would feel better.
Bargaining was a progress that took 6 years before I hit depression. My husband and I tried to have a baby starting in 2002. Our first serious attempt involving hormones and intrauterine insemination. I became incredibly ill with an extremely low blood pressure and ovaries the size of softballs. I was hospitalized twice. We tried a less serious method until 2007. With a new Dr, we tried pills and then hormones.
Surgery in February of the next year finally produced a pregnancy – three, in fact – all of which ended in miscarriages. My husband and I agreed we needed to stop. Emotionally, I couldn’t handle another miscarriage.
Wouldn’t you know, depression set in immediately! I lost my job, became suicidal, and progressed to a year of counseling.
It wasn’t until the diagnosis of another disease that brought me to acceptance.
In 2010, I had my first complex partial seizure. It left me with general weakness on the right side of my body and a diagnosis of adult-onset Tuberous Sclerosis. I had two non-malignant tumors in my brain – one in my temporal lobe and one in my parietal lobe.
This time, denial was my biggest hurdle. The neurologist made a request for a permanent disabled placard for our car. My husband helped somewhat by saying I was only partially disabled. I rehabilitated to the point that I could use a cane. And my neurologist cleared me to drive and work.
I found a job almost immediately and for the first few weeks, I was fine. But, then the absence seizures started; then the slurred words; and finally forgetfulness and stuttering. I could no longer use my cane. I was back to using my walker. Depression, anger, and bargaining came all at once.
Then, April came. I suffered another partial complex seizure. What started as stuttering led to expressive aphasia and a complete inability to walk. I was in denial that a second major seizure could make me physically worse. I was in denial that I would need almost 24-hour care. I was angry that I couldn’t participate in conversations, and by the time I finished writing my thoughts, the topic had changed.
Now I’m stuck in depression. I’ve become agoraphobic, guilty of how much I have to depend on people. I’ve lost my independence, and motivation comes and goes. I sleep more than I should, and I hate leaving my house.
I have all the symptoms of a severely depressed individual. I’ve considered suicide, but I don’t have a plan, and I refuse to be hospitalized again. You could say I’m afraid to become so depressed to commit suicide or to have suicidal ideation.
So, where am I? I’m stuck at a point that I feel useless and helpless. I feel that I’m a burden to anyone who reaches out to help me. And, mostly, I’m sad, frustrated, and fearful of another major seizure that will affect my cognition. It seems that’s the only thing that I’m most proud of and where I feel I have the greatest talent.
I refuse to leave this blog on a bad note. There is always someone you can talk to – a friend or counselor. A positive diagnosis is definitely scary, but no matter what, you are a person who has a disease, not a diseased person. That is a concept that others have to continually remind me.
Finally, I encourage you, to the best of your ability, to make it to the final step – acceptance.