When my diagnosis was shared with me by the doctor, my mom said “You need to find a support group.” I agreed. I knew that while my family was as supportive as they knew how to be, what I was going through required people who could relate, not just sympathize.
I was an extremely active person before Lupus reared its ugly head. After all, my nickname is “The Hurricane.” I was a mover and a shaker, a veritable force of nature. Like everyone else, my life has seen challenges. I never thought my issues were any more special than yours, and certainly never would burden others with how bad or sad I may have been feeling. I was dubbed “the strong one” whenever people would meet me and get to know me.
I am a Desert Storm veteran who came from inner-city Chicago, raised two kids on my own, and in many of my positions I have been either the only black or the only female. I’ve heard some things, put up with some things, endured some things. But I needed a support group.
Throughout the battle to figure out what was wrong with me, I learned that crying and asking for help does not mean you are weak. So, I set off to find support groups filled with people battling like me. What I found was a bit disheartening. In spite of all the “statistics” that I belong to, I also was a person who spit rainbows and pooped butterflies. (LOL! Now they’re purple butterflies). So, when I would see the sadness, it was hard for me. I know what we are fighting, but it was hard for me to see and hear about the suffering.
It seemed that in many of the groups, it was a contest to one-up the other. “I have lupus.” “Well, I have lupus and fibromyalgia.” “That’s nothing I have lupus, fibro and Crohn’s disease.” I remember thinking, “The only thing I have is …” As soon as I was ready to finish the thought, I realized I was feeling bad that I didn’t have more troubles. That’s a problem, so I started backing out of support groups.
One thing I have learned is we have a choice in how we deal with our problems. We don’t get a choice in what problems show up, but how we face them is on us. I started a support group of my own and I would tell people, you should not need a support group because of your support group.
I do my best to be encouraging. I post positive songs, messages and pictures. I know this disease is tough, and people are encouraged to talk about that, too. However, just dwelling on the negative is not something I promote, and when I see things going in that direction, I do my absolute best to give a different perspective. To be honest, there are days when I can’t take what my fellow butterflies are going through. I feel awful as I see pictures of them in hospital beds, hear the stories of how the doctors ignored them, or the nurses insinuated they were drug addicts. It hurts my heart and zaps me of my energy on some days.
I got to thinking, if I am battling and I’m feeling worn down from knowing of another’s suffering, can you imagine what our families, friends and significant others must feel? They can’t even relate and sometimes for me being supportive is hard. I want so badly to find a cure. I want so badly for people to wake up one day and their lives are amazing, filled with energy, painless and pharmaceutical side effect-free.
In the meantime, I try to pour a little sunshine on whatever I can and hope the support I offer is helping someone. But some days, it’s tough. Still, it’s what I feel I was called to do — bring a little sunshine into the storm.
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 Services, and are intended to spark discussion about issues pertaining to lupus.