In dark moments with lupus, promise that you’ll fight for yourself
Even if it's only a glimmer, hope is always present. We just have to hold tight.
It’s so easy to jump on the woe-is-me, this-isn’t-fair, what-did-I-do-to-deserve-this bandwagon and shout, kick, and scream at the awful “bad luck” and horrible timing of chronic, incurable sickness.
Feeling like a victim and falling into grief can seem inescapable when unprovoked pain, flares of skin rashes, hair loss, aggressive head pangs, and inhuman swelling affect you daily while living with systemic lupus erythematosus.
And, yes, it is normal to want to escape or retreat from a world of highly mobile people who are multitasking, superparenting, dynamic-dressing, happy-homemaking, and living life with snap-snap-snap efficiency.
For those of us who hold ourselves at a careful and safe distance from life’s extremes, the hope is to stay clear of any and all invisible viruses and triggers while trying new medications and health regimens that might allow us to be who we are, even with the constraints of lupus.
It can become overwhelming, disheartening, and scary, to say the least. In those moments, the only recourse I’ve found is to hold tight to myself, to fight for my self. (Self: a person’s essential being that distinguishes them from others.)
What that looks like
Holding tight to myself — my essential being — may be something as simple as holding a hum or hugging ice packs to stimulate my vagus nerve. It could mean quietly sketching aspects of a lucid dream, or allowing the moment and me to just be.
Fighting for myself could also be remembering a task I loved before lupus, grieving it if necessary, and promising to return to it. Fighting for myself may look like sitting in my car at the park, slowly eating pineapples, drinking ice-cold tomato juice, and listening to nothingness.
Whether I’m holding tight or fighting for myself, I am doing something unique to my core that will awaken and build up the healthiest parts of me. I believe the same is true for you, too. Both actions involve a hopeful outlook. Even if it’s just a glimmer, hope will help us see beyond the breaking parts.
Whitney Houston and Mariah Carey sang about hope in their 1998 duo “When You Believe.” One lyric says, “Though hope is frail, it’s hard to kill.”
Those moments of holding tight or fighting for ourselves are low emotional times when hope and strength seem most frail. But we must promise ourselves that we will reach beyond the breaking point of lupus pains and give ourselves a little more time, compassion, strength, and permission to be still and watch.
Commenting on his book “Reasons to Stay Alive,” author Matt Haig said, “Time heals. The bottom of the valley never provides the clearest view. The tunnel does have light at the end of it, even if we haven’t been able to see it.”
Through the tunnel of unpredictable flares and attacks on your immune system, seek remedies that will bring light and relief. Try to bring into view a reachable, healthier you. Fight for yourself, or just hold tight.
Promise that you will.
Let us see. Ball both of your fists. Stick out each pinkie, hook them together, and make a pinkie promise to your future self that you’ll do what’s best for you in order to tame and temper this wolf called lupus.
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.
About the Author
Tawana
I have to honestly say that I've never had that "woe is me" type of attitude. I was dx in 2001 with SLE with stage 4 kidney disease. I was very confused--I had o idea what lupus was. All I knew is that I wanted to fight! I am on my own--I don't have any family near by at all, friends have their own lives and families so it's just me! Doctors initially told me I would need to stop working and that I would never work again. I remember responding-"that's not true!". I was determined! The first couple of years were very rocky. I continued to work but did need to take a couple Leave of Absences for a few months each time. It was after the 3 rd time that I realized that I could still work but needed to be selective on the type of work that I did. I went through a lot financially because of that decision but I made peace with it from the get go.
Don't get me wrong--it has not been easy. I still have flares and bad ones. My SLE has also decided to take a liking to my skin and brain.
I refused to go n disability because I didn't feel that was the answer for me and I don't regret that decision. I never would have made it. Since disability pay isn't very much, just the financial stress alone probably would have killed me. I'm very proud of myself that I didn't listen to those who tried to convince me to go on disability. The last couple of years were getting harder and I knew I needed to make a change. I was very blessed to have found a position where I work from home and with a good salary! Here I am 2 years away from full retirement age. I don't think I will ever be able to fully retire but if God says the same, I plan to start collecting my SS benefits at age 67 since I can not only collect my benefits but if I choose to continue working, there is no cap on how much I can make. That's important to me because while I do anticipate I will still work, I can take a job less stressful and a lower salary. All I need is for my SS benefits and job income to equal at least what I'm making now!
I pray for God's blessings for everyone. This is YOUR journey to live. I think for me, I just knew I was not in a position where I could succumb to it so I had no choice but to fight!