Can you look at me for the first time and know whether or not I have lupus? Do I wear or have a defining mark on my face or my body? Do I have a neon “L” carved into my forehead? Do I look sick? NO – there is nothing in my appearance that verifies, that defines, that I live with, that I have a chronic, autoimmune disease called lupus. And that is one of our problems, one of the greatest frustrations those of us who live with lupus face.
We have what is known as an invisible chronic illness.
Those of us who have lupus do not look sick. We actually look quite healthy.
We get used to saying, “I’m fine,” when asked how we are feeling. We push through our pain and cover up our facial grimaces.
Because we look healthy, there are many, even those close to us, who do not believe us when we complain of joint pain or excessive fatigue, organ involvement, or brain fog. So we, the ones who have lupus, get used to saying, “I’m fine.” when asked how we are feeling. We wear a mask or a smile to hide how we really feel. We push through our pain and cover up our facial grimaces.
This leads us to feeling lonely, isolated, shamed, and misunderstood. Many of us turn into ourselves. Many of us feel as though no one – no one – understands how we truly feel. This is the time, if possible, that it is so important to find a circle of support- those individuals who will believe in us, understand us, really listen to and hear us.
Social Support 101
We need to seek out a lupus support group. Due to the current Covid pandemic, most support groups are virtual. Before Covid, I facilitated an in-person support group. And then, when Covid hit, I began to facilitate a virtual group. I preferred to keep the numbers small so everyone would have time to share their story, vent that which bothered them, and have time to receive emotional support from others. The rules for inclusion to the group were:
~You had to have lupus,
~You had to keep what you heard confidential,
~You could not turn the group into a pity party,
~You had to treat everyone with respect and dignity,
~And you would not demean anyone else for their opinions if different from yours.
I wanted the participants to feel coming to this support group was their safe haven. They could feel nurtured, believed, have validity for their feelings, and no longer feel isolated. They would be surrounded by those who fully believed them and in them. Everyone in the support group “walked the walk”. Everyone attending lived with lupus within their body. No participant for the duration of the meeting would feel alone or not heard.
People would say: “I felt for once people believed what I said.” “I did not feel alone.” “I felt like I was among others that felt the same way I did.”
As the facilitator, I felt it was my job to ensure every participant was given a fair share of the time to vent, that no one monopolized the group, that overall people could feel hope and a sense of positivity by the time the meeting came to a close. Ever since I began facilitating a support group over the years, I would end the meeting the same way. I would ask the group as a whole, “What did you get out of joining the group today? If you feel you did not gain anything, it is okay to say that. But if you gained something, tell us what it is.” Invariably, over 90 to 95% would say something very positive about the meeting. Examples would be, “I felt for once people believed what I said.” “I did not feel alone.” “I felt like I was among others that felt the same way I did.” “I did not feel I had to explain myself.” “I learned new ways to cope – reduce my stress – to relax.”
Which Group is Right for You?
Please keep in mind that just as no two people physically have lupus exactly the same way, no facilitators run their meetings exactly the same way. What I have written is just one way. Some are more educational with a guest speaker. Some include not only those who have lupus, but those who love them, significant others, etc. Some are for women only, some for men only, some for newly diagnosed, and some for lupus veterans. Some focus on overlapping diseases. There is a lupus support group for everyone who needs one.
Try researching lupus support groups. Contact the lupus nonprofits. First determine, if there is a group in your state. Some would include: Lupus Chick, Michigan Lupus Foundation, More Than Lupus, Lupus Research Alliance, Lupus Foundation of America, etc. Call or email them or other foundations to determine if they offer a lupus support group you could attend or inform you of one available. Sign up for one. See how you like it. Some first time attendees feel anxious and that is such a natural emotion for trying something your first time. Make a commitment to go outside of the box and attend a group. I hope it will be a good fit for you and you will not only enjoy participating but enjoy the experience and meet new and wonderful friends.
Have you ever attended or led a support group for Lupus? What are your thoughts and advice for others? Tell us in the comments below so everyone can benefit from your experience.
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.