The Emotions That Followed After I Received My Diagnosis
I began to have symptoms in middle school that most doctors more or less shrugged off.
“Stress,” they said.
When the prescribed treatment, relaxation, and meditation didn’t help, I went back.
“Change your diet” they said, and I did.
I tried several diets in fact, with no results. I went back and once again was given an explanation that was wrong and a treatment that did not work. This cycle continued on and on for several years as my symptoms got worse and worse. Eventually my symptoms became bad enough to warrant visits to the hospital.
By the fourth time I ended up in the ER, I had all but given up hope of finding a solution and explanation for my suffering. It seemed no one knew what was wrong me, and even more disheartening, no one seemed to care. I’ve come to learn that this is a feeling those with chronic illness know all too well. After 15 years and a seemingly endless series of uncomfortable and intrusive tests I finally got what I always wanted: A diagnosis.
What followed was a confusing mix of emotions. For a brief moment I was relieved to finally have an answer after years of not knowing. And I had been validated, a strangely satisfying feeling. It felt good to know that I was not imagining things or exaggerating. I was right that there was genuinely something wrong. But this feeling only lasted for about two seconds and then it hit me — there was genuinely something wrong.
My feelings shifted to anger. Why had it taken 15 years to get a diagnosis? Why hadn’t doctors taken me more seriously? If I had been treated or tested earlier, could we have prevented the extensive damage I now had to deal with? If modern science is so great, why do we not have a cause or a cure? And of course, “Why is this happening to me?”
I wallowed in the overwhelming feeling of self-pity. I threw things. I may have punched a few innocent pillows. I called my mother in tears to voice my frustration. “It’s OK to have a pity party right now,” she said, “I’ll join you. I’ll even make hats and bring a cake if you want.”
After anger came sadness. Suddenly my life had been split in two, life before and life after diagnosis. I began to mourn my pre-diagnosis life. I had worked hard in my preparations for grad school and suddenly I had to withdraw from class for treatment. I had to ask for time off from the new job I had only started a month before. The trips I had been looking forward to with my husband were canceled. People began to ask questions and I didn’t know how to respond.
I knew what was happening with my body, but I didn’t know how much I was ready to share with the world. I was embarrassed and worried about what people might think. I began to cry randomly in the car, in the shower, washing dishes or some other time that I was alone and let my guard down.
Fear and guilt have crept in to take a turn as well. Since my disease currently has no cure I now face a lifetime of medication and surgery. I will probably develop more symptoms in the future in addition to the immunosuppression and recurring disease. I worry how this will affect my career goals. I worry how this will affect my relationship with my husband, my family and my friends. I now have a slightly higher risk of developing certain types of cancer and the drugs have nasty side effects like birth defects, severe infections and additional risk of developing cancer. I have become hyperaware that my life is not without limits.
If you have recently been diagnosed with a chronic illness and my story seems familiar to you, take heart. You are not alone. Experiencing a broad range of emotions after diagnosis of a serious illness is normal according to psychologists.
If you are struggling to cope with a new diagnosis consider joining an online or in-person support group. I did this and found it to be incredibly helpful. Not only did I find people who knew what I was going through, but they were also able to provide me with tips and suggestions to aid in the management of my disease. Talking to a professional such as a licensed therapist or psychologist is also a good option to help you come to terms with your new diagnosis. Depression is very common in individuals with a serious illness, and there is no shame in getting help from a professional. Again, I’ve done it and can’t recommend it enough.
Getting a new diagnosis can be a scary event filled with many emotions, but remember that life with chronic disease can still be fulfilling and joyful. Mixed in with the feelings mentioned above were some good feelings as well. I’ve had an outpouring of love and support from family and friends, and have been amazed and humbled by some of the kind words and gestures that people have offered to me. I have been stretched outside of my comfort zone and become a stronger, better person because of it.
Hang in there fellow fighter! You are not alone in your journey.
If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.
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