I had symptoms for a long time — but doctors told me I was fine and it was all in my head, while performing all kinds of tests with weirder-than-ever names and possibilities. No matter how many times they told me it was nothing, I knew there was something wrong with me. I felt so bad — was that normal? I questioned my own sanity some days, and other days I questioned theirs. I had grown scared to go to the doctor when yet another symptom appeared. I felt like the doctor would think, “Here comes the hypochondriac, what will she invent now?” But I wasn’t inventing anything — was I? The pain and fatigue were real, and I couldn’t get out of bed some days. Or was my family right, and I was just lazy?
Then I became sick again and was referred to a rheumatologist. I really hoped he would finally know what was wrong with me.
[See: 10 Questions Doctors Wish Their Patients Would Ask.]
Here’s what I heard: “You have a chronic illness, and it will never go away. It’s degenerative and will eventually be lethal, but with certain medications it can be controlled, although they have side effects we’ll have to monitor closely. You can never again do….”
When you receive news like that, the world closes in. Possibilities shrink. The panorama for the rest of your life suddenly seems bleak: a constant ill feeling, going from one pain to another endlessly, unable to do many things you enjoyed before. Suddenly there is no sense and purpose to life. Your body has become a sort of prison from which you can never escape, except through death. You suddenly remember you did want to know what was wrong with you. Now that you finally know, you are not sure anymore. But it’s too late — now you have an indelible label, a sentence of sorts from which you will never again be free. The doctor becomes the only one capable of saving you, and also the dreaded bearer of bad news. From now on you will depend on him or her for every little change or symptom, and he or she will become your confessor and pain manager and if you’re lucky, a friend.
[See: HIPAA: Protecting Your Health Information.]
When you hear the words naming what you have, you experience a great loss in a single moment. It’s a fringe experience, and your life will be eternally divided into a before and after the diagnosis. You were a “person” before; after, you feel like you have become a ” cancer,” “diabetes” or ” lupus.” You lose your sense of purpose in life, your plans for the future may change radically and you will probably lose friends and maybe even your job as it becomes increasingly difficult to perform. You have definitely lost your freedom to do as you please, for the illness will redirect your life from this moment on. Some people go through the process of grieving for their loss; many others don’t even realize they are entitled to grieve, for after all, they are not dying just yet.
Receiving a diagnosis for chronic Illness is a shock to the system and should be dealt with accordingly, with apt professional help, for it not only affects the body, it affects the whole person and his or her emotions. It goes to the very soul. It also affects the patient’s family and social circles. The chronic patient and his or her family need to seek help in analyzing and processing the emotions generated by the experience of the diagnosis.
[See: 14 Things You Didn’t Know About Nurses.]
10 Lessons From Empowered Patients
Milly Diericx was diagnosed with lupus erythematosus systemicus in 2001. She is a therapist and the author of “Befriending the Wolf: The Guide to Living and Thriving with Lupus,” which is available at Amazon and booksellers worldwide.
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What It’s Like to Be Diagnosed With a Chronic Illness originally appeared on usnews.com
