Are you currently in a season where you think back to the things you used to take part in before you were diagnosed with a chronic illness? Have you experienced the loss of friends or once beloved activities? If so, keep reading. I have a story to share with you…
I facilitated a support group several months back which included a newly diagnosed woman with lupus. She was quite tearful as she vented to the group how significantly her life had changed. She described how previously her life had consisted of fun, friends, and family, while keeping busy and active all the time. Now her life was filled with sadness, hair loss, pain, fatigue, and an inability to keep up the pace with her close-knit friends. The commonality of her group had focused on running. They did marathons, went for five-mile runs, went hiking. They enjoyed spur-of-the-moment “girl-weekends”, shopping, meeting for lunch, talking on the phone. Their friendships were tremendously valued by this newly diagnosed woman who truly believed her friends would always be there for her no matter what.
When Chronic Illness Changes Relationships
She soon learned she could no longer count on every friend in the group to support her now that she had this chronic illness. Yes, one in particular was wonderful; she listened and asked pertinent questions, and was very caring. But another woman who had been considered a very close friend would instantly change the subject or act disinterested whenever lupus was brought up. Two others even stopped calling. This was devastating. Was this newly diagnosed woman whose body now contained an illness that would last forever a stranger to who she had been? She was finding it so difficult to be the new person she had become. “I want my ME back. Now that I can’t keep up, they won’t want to be my friends anymore. I’ll be left behind like I don’t matter.”
The other support group participants were silent as tears rolled down the cheeks of several women who were remembering how they had felt when new to lupus. The group felt great empathy and compassion. Each of them had gone through this type of emotionality in the early days of their own journey.
Allowing Ourselves to Grieve a Diagnosis
After a moment or two, I told the deflated and defeated woman that what she was feeling was deep sadness and grief and while very normal, was quite painful. Grieving is not only when we have lost a loved one that has died. Grieving also occurs whenever there is a transition from one part or stage of our life to another. People grieve when a dear friend moves away; we grieve when we graduate high school and go on to college leaving many of our high school friends behind. We grieve when we get a new job because we are leaving our work family we had become close to. And we most certainly grieve when we are diagnosed with an autoimmune, chronic, life-altering disease that has no cure and makes changes in our life for ever more. We travel through the stages of grief which include: anger-shock-bargaining-depression-and ultimately acceptance. Acceptance can take an average of two years or more to achieve where your new you accepts lupus into your very being, as one part of who you have become.
Discovering a New-Found Passion
One of the specific methods of finding and learning to love and accept your new you is discovering a new passion that you absorb into your changed life now that you live with a chronic illness. It should be something that you really love that can bring you happiness, friends, activities, and bring sheer joy and blessings into your life. The beauty of who and what those of us who live and thrive with autoimmune illnesses is the innate ability we have to grow and observe how to empower ourselves with new goals and achievements. We recognize that we are actually enormously stronger, more resilient, and braver than we could ever have imagined.
On a personal note, I graduated with a master’s in social work one year following my lupus diagnosis over thirty years ago. Two years following my diagnosis, I made a momentous decision to change the negativity of having lupus into the positivity of dedicating my life to helping those people who shared my illness, cope and learn to bring lupus into their very being. In the years since, I became very involved with volunteering and advocating. My life was so fulfilled not in spite of living with lupus but because of it. I loved what I was doing. I met so many people in the lupus community and connected with them. I found my joy and I felt blessed over and over again.
Everyone has a talent within their very core. Yours may be writing, painting, dancing, designing, parenting, mentoring, public speaking. Whatever your talent, whatever your passion, groom it, embody it, make it your own. Nurture your talent until you can make it the best it can be because you and only you will own your own unique talent exclusively; it will only belong to you. As several support group meetings have now passed since this newly diagnosed lady attended her first meeting, she now relates with pride in her voice that she has learned she has great organizational skills and has begun planning a virtual walk in her area to raise money for lupus research. Finding this new passion has given her confidence, has allowed her to meet people in the lupus community, and has sent her on a fast track to accepting who she is now, a woman who happens to have a chronic illness, yet thrives to be the very best she can be.
What have you discovered about yourself since you were diagnosed? Did you take on a new hobby, discover a new talent, or get involved with a group you were once unfamiliar with? We would love to hear about it in the comments below and others will be inspired by your words!
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.
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