A Powerful Perspective, our blog series, is by you and for you. In your own words, we highlight the perspectives and personal experiences of people who live with lupus each day, whether as a patient or as a caregiver. Mostly, we celebrate what makes the lupus community powerful, together.
So I’m going to be real:
I hate it when I meet someone and they ask what I do for a job. I don’t have one – for health reasons. Even if they are super nice about it, even if they don’t pry, even if they don’t seem like they are being judgmental-
I just hate it.
It makes me squirm.
I don’t know how much detail to go into, and I’m worried about what assumptions they are making about me.
Also, it makes me feel bad about myself, because after all this time, I still judge myself for it, even though I would never judge someone else the same.
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But let me let you in on a secret-
If you’re living with a chronic illness, you have a job and it’s full-time.
Your job is to keep track of your medications and take them as prescribed.
Your job is to be gentle with yourself as you adjust to this new normal.
Your job is to keep your health records organized and in a safe place.
Your job is to inform yourself of your illnesses so you can be your own advocate.
Your job is to keep up with your Drs appointments, tests, and procedures.
Your job is to get your bloodwork done often to monitor your levels. Your job is to do the best you can do and allow yourself rest when needed.
Your job is to find support groups and resources so you aren’t facing this alone.
Your job is to try to inform your family, friends, and community of what you’re dealing with because ignorance isn’t bliss.
Your job is to figure out what’s most important after the diagnosis and focus your energy on that. Your job is to ignore the rude comments and know in your heart that you’re doing the best you know-how.
Your job is to eat healthier and make a conscious decision to make your health a priority.
Your job is to prevent things like the sun and stress which causes flares.
Your job is to adjust to your “new normal”.
So yes, I don’t have a job. I don’t make tons of money. I’m not climbing the ladder of success. I’m not getting promotions or public recognition. I’m not a prestigious lawyer or Dr.
I’m just a 24-year-old lady trying to navigate her way through life’s obstacles while living with multiple diagnoses. I may not have your idea of a job. But trust me, I have a job. A job that many people wouldn’t apply for.
Read more of Sarah's blog here.
Written on May 6, 2020 – By Kenny Londono, MS, LMFT
This blog was written in honor of National Lupus Awareness Month.
Never would I have imagined I would become a licensed marriage and family therapist and that I’d work at a hospital. At least that wasn’t the plan after graduating from high school or during the first two years of college. My parents often share a story of when I was three years old, and I helped them paint the walls of our New York City apartment. My dad asked me what I wanted to be when I grew up. He said my response was, “I want to be a painter.”
As the three-year-old version of me who aspired to someday become a painter of apartments became a young adult, I felt lost and uncertain about my journey. Life was about going through the motions. I went to college because my parents wanted me to continue my education and succeed as a professional adult. I wavered back and forth between business and screenwriting but was always afraid of failing or just getting the nerve to begin the process. My track suddenly changed after lupus caused my kidney function to fail in the summer of 2003.
How Lupus Became a Blessing
At the age of 18, I developed a chronic medical condition that would amount to many visits to the hospital and getting stuck with needles almost every week. The fear of uncertainty became more realistic with every passing minute, as I wondered if lupus was going to be my death sentence.
During the first three years of my battle with lupus, I experienced severe joint and bone pain, extreme fatigue, hair loss, butterfly rashes over my eyebrows and the bridge of my nose, and anemia. Trying to complete a semester of college at any given time during the first two years was impossible. The pain was so unbearable, I had to withdraw from my courses.
As I started showing some progress, lupus came back like a storm, this time causing end-stage renal failure and leading to dialysis. It felt like the end was near. I could have chosen to stay locked in the dark and not allow anyone into my new and scary world known as lupus, but something in me which I can’t explain said everything was going to be fine. The fear that once consumed me began to slowly wash away like the waves of the ocean swallowing away the footprints of the sand. Sure enough, I miraculously recovered but wasn’t in the clear just yet. After long deliberations and prayer, I was inspired to be an agent of change and give back in a way that encourages others who experience a similar road of pain and uncertainty. I chose for lupus to be a blessing for me, instead of it being a death sentence or a curse. Granted, there are times when I feel it’s a curse due to many restrictions I face such as limiting my exposure in the sun, the limited options of foods I can consume due to my kidney failure, and being immunocompromised. However, I’m constantly reminded by loved ones how far I’ve come since the days I felt crippled and unable to walk, or the more recent event when my wife and family members saw me intubated in the ICU for two weeks not knowing if I would live to kiss and hug them again.
My wife and doctors have joked about me having nine lives. Well, if that were the case, then I must be on at least my fifth life at this very moment and am doing all that’s possible to remain alive at life number five. I think my job is far from complete. As long as I have a breath to breathe and the strength to walk and speak, I still have more work to do. This condition has been my biggest enemy at times, yet has found a way to make me stronger. Lupus doesn’t have to be a death sentence, and it sure doesn’t have to define me or my ability to contribute to this world.
I came from not knowing what I wanted to be when I grew up, to knowing I wanted to be a counselor for the chronically ill. I came from being a relatively healthy child to falling chronically ill in my adulthood life. I came from being scared and fearful of the unknown to becoming resilient and hopeful for this day God gave me. Throughout life, I have been thrown many obstacles; yet those obstacles became challenges I learned to accept and overcome so I can continue the job I’ve been called to do while I’m still breathing.
How about you? What challenge or obstacle do you face in your own life that doesn’t have to hold you back or define you? How can you seek to overcome this obstacle in such a way it does not interfere with your ability to contribute meaningfully to the world?
Remember, no one is immune from challenges. We are all in this together!
“I have told you these things, so that in me you may have peace. In this world, you will have trouble. But take heart! I have overcome the world.” John 16:33
By Lupus Warrior Sara Esidore (The Lupus Trainer)
We are facing people within our own families and social circles who are radically disobeying social distancing while trying to justify their actions to us when really all we hear is, “my healthy life is more important and valuable than your sick/ disabled one.” It’s like they scream it directly into our face every time they leave their house for a non-essential reason. If you think I’m wrong about this ask your sick or disabled friend how it makes them feel.
🟣 Every day we are trying to decipher which symptoms are from our chronic illness and which symptoms could possibly be the virus or another illness such as a cold or flu. Flu season didn’t go away because COVID-19 showed up and as long as we’re still having to go out in public or being exposed to people who have, we have to be vigilant. It’s not just COVID-19 that can take us down, we have vulnerabilities and risk of organ damage or death for many other acute illnesses too.
🟣 Each week we have wonderful people checking in on us and we have to make the decision (usually based on how we think they’re coping) to either fully tell them how hard it’s been or to sugarcoat it (highlighting the positives) and hurry along with the conversation to the next topic. We often choose to spare them of the depressing truth of what’s really going on with us.
🟣 We are forced to face our own mortality and limitations even more now than we already had to living with a chronic illness for years. We know we’re the “sacrifice” the government and society are arguing over and whether or not we’re worth losing to save the economy. We can hear you when you incorrectly state, “we’ll be okay if we catch it, it’s only sick and elderly that will die.”
🟣 We are dealing with and suppressing anger that builds inside us when we see accessibility accommodations that were deemed impossible for us magically be made possible for able-bodied people within days.
There is another thing that weighs on my mind non stop because it seems that everyone now is starting to discuss the reopening of the economy and speculating when everyone will get to resume their daily routines. Even though so much has changed many healthy people will still be able to go back to their somewhat normal lives and back to doing many of the activities they enjoy.
The truth is that I have to be realistic with myself when I start to speculate about this. Until there is a vaccine or cure for COVID-19 I will not be able to safely go outside in public or resume activities. This is a completely different ballgame and timeframe if you’re chronically ill. There is no just “going back” to where we were before, at least not until a vaccine or cure is found.
If I look at the trends and the way this virus has been spreading I can do some basic math and figure out that this means I could be stuck inside for the next 6 months, a year, or maybe even longer. This is a very difficult truth to come to terms with and so I am trying not to think about it and just get by day to day.
Except it’s always lurking in my mind because whenever I think about the future I can’t see myself running free into the world again once everything picks back up again. It’s something I’m really struggling with.
I suppose it’s some anger and grief because I just spent an entire year in 2019 being bedridden and homebound so 2020 was going to be the year I improved enough to get back out of bed and out and about doing more things. 2020 was the year I was supposed to improve on my new treatment plan and set a date to marry my fiancée Amy.
I’m just at a loss right now because I also feel very selfish for feeling this way when I know how privileged I am to have access to food, shelter, support, and healthcare right now. I’m sure I’m not alone in feeling this way so thanks for allowing me the space to share, and thanks for listening.