Understanding the grief of chronic illness has made me more self-aware
Recognizing my losses helps me accept change in life with lupus
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Although National Grief Awareness Day, observed Aug. 30, was founded by activist Angie Cartwright in 2014, I have seen it mentioned much more frequently this year than in years past. Maybe it’s because so many people are feeling the heaviness of loss, whether it’s related to employment, finances, or death.
There is a particular grief that those of us living with chronic illness experience. There’s the loss of the life we lived prior to getting sick, and the loss of the future we’d envisioned or were planning. We may lose our strength, hair, sleep, jobs or careers, active lifestyle, physique, sexiness, mobility, stamina, or even memory. Many of us also face the loss of friendships, family bonds, work relationships, situationships, or marriages.
The grief of these losses comes in waves. As we adjust to the ways lupus can dismantle our lives, we must also contend with changes to our identity. Are we now a “lupie,” a patient, a warrior, a host, a “spoonie,” a survivor, or none of those? Disability can even affect our self-esteem and sense of self.
Understanding how lupus has caused grief has helped me accept the changes in my life. Coexisting with the illness and its comorbidities means mastering self-awareness in order to live each moment fully.
Whether that moment entails being in the hospital again with no relief or being trapped in bed in pain, remembering how I survived the last flare gives me courage that the moment will pass and joy will return. I am not ignoring the fact that lupus is chronic and has no cure (yet). But I am encouraging others to be stubborn enough to live through the roller coaster of grief and continue reaching for joy.
Digital creator Joyce Bryant recently shared a powerful Instagram post about grieving the end of a relationship. Although it had nothing to do with chronic illness, I believe we can still relate to her words: “Grief and Joy can come in the same day, just make sure you don’t stop showing up for YOU.”
A form of love and awareness
But awareness of grief isn’t limited to what we personally experience. There are steps we can take now to help our loved ones navigate grief after our passing.
August also happens to be National Multiethnic Donor Awareness Month and Make-a-Will Month. Many health organizations, including the American Heart Association, the American Red Cross, the National Foundation for Cancer Research, and the Lupus Research Alliance, are encouraging people living with chronic conditions to write or update their wills and advance directives. Preparing these end-of-life documents isn’t a comfortable thing to think about or do, but platforms like FreeWill share tools to make the process less daunting. They can also help you determine which charities you’d like to support after your passing, if any.
I am not promoting any particular service; I am only suggesting that you (and I) make these preparations. Louisiana attorney Dawn Chanet Collins advised me that the online templates can only guide us on what information to prepare and which questions to consider as we prepare to meet with an attorney.
“Unfortunately, grief is such a powerful force. Sometimes, even with a will, families bicker over details, which makes it important to get help from an attorney instead of finding a template online or using a template,” Collins told me. I take special note of her advice because testament laws in Louisiana, where I live, differ from those in the other 49 states.
Taking time to prepare a will and testament to bring clarity for your loved ones during their grief is another form of awareness. Take on this task with courage. Secure the help of an attorney, and please spend time talking with a good therapist about the grief your body carries. Doing so is a way of showing love.
Making the effort and following through are reasons to celebrate — and I hope to celebrate with you.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.
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