We Are Not Defined by Lupus
Lupus warriors Anna Scanlon and Barbara Leech share how to separate yourself from this disease.
Barbara's Story: When Disease Invades Your Life
My eight-year-old son recently wrote a bio of himself for a school project, and the part about family really struck me hard. It read, “My dad is funny and makes me laugh. My mom has lupus.” I read it and my heart began to ache.
This is what my legacy sometimes is — disease and illness. I don’t want my children’s memories filled with disappointment because I was not there for them, or that I was present for them but no fun because I was ill. I want them to remember good times with me, but I fear that the wolf has set unreasonable limits to my “normal” moments.
As a mom of four with lupus, it is a daily battle between guilt and endurance. Both have had years of intense training with lupus serving as their relentless coach. Some days I endure well, others I fail miserably. I have tried to make peace with both, but I am only human and I feel like I am battling daily to be more than lupus.
Lupus presents unique parental challenges. Plain and simple, I cannot always do what I want, when I want to do it. The weather, temperature, sunshine, and the intensity of a flare all dictate if I can attend some of my children’s activities or simply jump in the car and go do something with them.
Even playtime is not the joy it should be and I often struggle to keep up. What should be fun becomes a test of strength, and it is exhausting. I see other parents and feel cheated of what they all seem to take for granted — laughter and fun without a price tag of pain.
My older children, ages 24 and 28, still need me. Honestly, all four have moments and occasions that I should unquestionably be present for. But, these demands with lupus mean I carry a load heavier than most in order to keep everyone supported as they should be, and I usually find myself so tired I can barely communicate my need to rest.
As a result, I ignore housework tasks then feel guilty until either disgust or a need for everyone to have clean underpants motivates me do what I must do. I live forever on a treadmill with guilt and endurance running beside me.
How I Battle to Be More Than Lupus
Though some days I feel lupus has won, I try to overcome and be more than just this disease. I hope my kids see that. I hope they realize how hard I fight — and that I do so mostly for them.
There are certain things, no matter what, I refuse to give up doing — things that matter. Hopefully my kids will remember me cheering them on, the amazing birthday parties I put together no matter what, all the crazy inventive cakes I create to go with their theme, the tasks I take on to make holidays, parties and everyday moments special for them.
I hope they treasure the small adventures I plan; like random scavenger hunts and picnics in the park followed by ice cream. I want to be known for these things, not my disease.
So many times this week I wanted to surrender and just go back to bed. I don’t do it and I desperately want to be remembered for that strength as well. If they are going to think of lupus when they think of me, I want it to be focused on my endless endurance. I want to be thought of as a warrior, not a victim.
Tricks to Put Lupus in Its Place
I have found a few tricks in meeting my motherhood expectations:
- Though I really do try not to complain too much, I do try to keep it real. Mommy gets tired and is only human. I have limits and though they may be caused by lupus, they are a part of life for many people, not just me.
- Sometimes you have to say no. Simply put, children do not have to participate in every single sport, group or activity that exists. My kids pick their top interests, but moderation is key. I only help out at school for certain events; I must say no to some activities and commitments and not feel less of a person for doing so.
- Eat for health. I cook complete meals 95 percent of the time, even if it means using the crockpot. Real food is vital to avoid flares.
- Plan ahead. I always create a strategy to help me endure. If it is cold, I utilize chemical hand-warmer packs (found at home improvement stores) tucked into my coat pockets, gloves and boots. For events or parades, I secure a viewing spot near a store, café or my car, so I can escape inside if the pain becomes too severe.
I am certain my kids do not think about lupus most of the time. I try very hard not to make it a topic of conversation every day or focus on the challenges, but I know they are aware it has impacted who I am and how much I can do sometimes. That is our reality.
The positive side of this is they have learned compassion from seeing someone struggle and persevere. I hope that I am making the impact I wish to, and in the long-run will be remembered for what I do for them, not what lupus has done to me.