The Stages of Accepting You Have Lupus
Last updated: October 2022
Lupus might impact your skin, joints, or kidneys. But living with a long-term chronic illness forever impacts your mindset. In many ways, adjusting to life with lupus can feel like grieving someone dear to you that you've lost, and that person is you. It's normal to feel grief, anger, and fear; these are all rational human emotions and are completely appropriate in the face of a life-altering diagnosis. Here are some of the stages you might go through when you are diagnosed with lupus:
The average time it takes for a person to be correctly diagnosed with lupus is 6 years.1 That means years of baffling symptoms that seem to come and go with no discernible pattern. It may also mean years of being dismissed or misdiagnosed by doctors who see a young person in front of them who doesn’t look sick and might even present with normal blood tests. Especially if your symptoms are debilitating, you might be afraid that you’ll never feel better or that doctors will never find out what’s wrong.
Not looking sick when you feel terrible inside might even make you feel like you’re losing your mind. Know that you are far from alone in this experience. Millions of people with invisible illnesses, particularly women and women of color, are misdiagnosed or have their symptoms minimized by the doctors they trust to heal them. Finding communities or people who are going through similar experiences, whether online or in-person, can help you stay strong through this difficult time.
Relief for a diagnosis
When you are finally diagnosed with lupus, you might feel relief. To able-bodied people, this might seem like a strange reaction to being diagnosed with a life-long illness. However, many newly diagnosed lupus patients are relieved to finally have their pain validated. "It’s not all in my head," they might think. The diagnosing rheumatologist will also likely start the patient on a regimen of medicine that will lessen some of the patient’s pain and fatigue.
Denial of lupus
The word "chronic" in chronic illness is difficult to fully comprehend unless you’ve lived with your disease for a few years. Denial doesn’t usually take the form of denying that you have an illness. Rather, denial comes in the form of not accepting that life might happen at a slower pace from now on. Denial happens not in the doctor’s office, but in the moments when you ignore and push past fatigue and pain in an effort to live your life as if you don’t have lupus. Unfortunately, you may learn that doing what your body has always done will now send you to bed for days or even into a flare.
Grief and anger about lupus
You might struggle with grief and anger after the relief of a diagnosis and the period of denial fades. Anger can take the form of "why me?" Grief often lasts longer. The strongest and longest-lasting grief I’ve ever experienced was the grief of losing my old way of life. It felt like the person who I’d once been before lupus had died. Reaching out to good friends, joining a support group, and speaking to a therapist who specializes in chronic illness can be a lifeline through this time.
How to accept lupus
When you’re struggling to adapt to a new diagnosis or searching for a diagnosis that explains your mysterious symptoms, it seems like the only way your life will return to normal will be if you are cured. It can take many years to settle into what you will now consider normal. The fear, anxiety, and anger at your symptoms will fade as you become more adept at listening to your body and managing your symptoms. Life has changed, but you have grown and changed with it.
One day years into my illness, it occurred to me that grief can function as a second chronic illness. Grief siphons energy from your body, just like lupus does. Did I want to live with 2 chronic illnesses, or just 1? This realization, coupled with time, allowed me to let go of my grief. Lupus has changed my life in many ways, but many of the things I love about life will always be here. I can still snuggle with my rescue dogs and laugh with my friends. I can still listen to Bach and watch the birds outside my window build a nest. I’m still me, and lupus can never change that. As a friend from my support group says, "You have lupus...but lupus doesn't have you."
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?