What does it feel like being diagnosed with a chronic illness such as lupus? Is it sad, is it overwhelming, is it frightening? Is it something you do not fully or even minimally understand? Do you feel that this diagnosis cannot be real? Does it make you angry, even furious? Yes. Yes could be the answer to one, some, or all of the above questions if you are the individual who receives the doctor’s diagnosis.
Up to this point, if you are like many, you may not have been feeling well for quite some time. You likely have gone to several physicians and have been given many explanations. You may have even received tentative answers, but none that you can fully accept. You may have seen doctors that acted indifferent, uncaring, not giving you the time to state how you feel. You may have seen some that must have skipped the class “How to listen to your patient” when in med school. Possibly you have seen a doctor who acted as though your descriptions, your words, and your feelings were not to be believed. Some of you may have sensed the doctor thought you were drug-seeking or a hypochondriac.
Finally, after weeks, months, even years, you connect with a doctor you feel comfortable with, who really listens, who hears you, who looks right at you as you speak and not at the computer or the clock. And ultimately, you are told you have a chronic illness, one that has no cure but can be treated.
After initially feeling some elation that a professional believes you and in you, and you are given an actual name for what you have, realization sets in. The elation, the euphoria disappears entirely and the truth begins to take hold. You have an illness that will never, ever go away. You have an illness that has no cure. What will happen to you? What is the process you must go through to accept the loss of who you were? And how do you learn to love and accept in your heart, in your soul, the you who will now be the new you?
The process of accepting the new you is being able to learn how to relinquish the parts of you that you will need to give up or put aside. It is learning to accept that you must eliminate activities you enjoyed and accept changes in your new way of life. Is this easy? Absolutely not. Can you do this in time? Absolutely yes! Hundreds, even thousands have done this. You can too!
The one change that will allow you to accept the new you, is you will learn to adapt. You will learn to adjust to a new life style that will accommodate the new boundaries of your illness. You will learn to accept your new you but you will first likely go through a grief process.
This is difficult. It is doable, but difficult.
You will go through the stages of grief in no specific order, even jumping back and forth: anger; sadness; bargaining; shock; and finally acceptance. You will need to educate yourself by learning all the information about your illness that you can. You will in turn educate your loved ones. If possible, you will be able to join an organization that promotes, educates, researches, and whose mission it is to support people who live with your illness. By joining this type of organization, you will meet other people who live with your chronic illness. They will support you, understand you, and allow you to no longer feel isolated or alone. They will provide you with mentorship, understanding and friendship. You will also learn how to advocate for yourself as a patient and a representative of your chronic illness.
During this diverse process, you will steadily but surely become stronger and braver. You will become resilient, more confidant, find new passions, control what you can and accept what you cannot, learn to live with unpredictability, and learn to accommodate changes you will need to make, such as knowing when to rest and learning what your body needs. You will learn to deal with those who do not understand you and your illness. As time goes on, you will slowly but surely become a fierce and valiant Warrior.
Will you fail sometimes? Yes.
Will you want to give up? Yes, sometimes.
Will you stumble along the way? Sure, at times.
Living with the intricacies of a chronic illness is complex and emotional.
Yet as fellow Warriors, there is an energy that ultimately becomes ingrained in us; a strength we never thought possible that embodies us; an inner belief in ourselves that we cannot nor will we ever give up – No Way – Never. We become mighty. Sometimes we have to dig way down deep to find “Hope” when we feel hopeless, but hope will become an integral part of our soul. That is how we can push through so much when others who do not live with chronicity do not even know how to take the first step.
The process of accepting ourselves now that we have a chronic illness is arduous. It is like starting out as a newly planted tree, a sapling. It takes time to grow; it takes patience and care. We must feed it, water it, nurture it. As the tree grows, it becomes stronger and taller. It becomes capable of standing straight even in a strong wind. It may sway but it does not fall down. It just keeps growing and reaching for the clouds. And just as a tree grows, so will you, stronger and braver each and every day.
Donna Oram, MSW, ACSW is a Lupus thriver and the author of “When Lupus Throws You For A Loop” available on Amazon. It is about learning how to live with the complexities of lupus, learning to cope, and accept your illness into your very being. Donna has a passion for writing, and for volunteering and advocating in the lupus community. She has been a Lupus Warrior for thirty years and is a retired master’s level social worker. She and her husband of 56 years are blessed to live near her children and four grandchildren.