Nor am I having a pity party. I'm sitting in front of a space heater, despite a warm day, because the heat seems to "melt" the stiffness. I have things I want to do today. As long as I am alive, I will fight back., fight on.
What I am doing is trying to help people understand SLE. Yesterday I spent at Lowe's and Michael's, shopping for items for my bathroom renovation and a crafts project. Then I closed the daylight down by raking leaves and using them to layout my front garden. These I covered with heavier mulch from my dead pine trees pile, to keep them from blowing back over the yard. Mulch is a wonderful thing. It holds water in droughts, keeps roots warmer in cold snaps, and eventually breaks down and feeds the soil. Also, for me, it's an easy way to weed. A 3-5" layer will actually kill off the weeds and Bermuda grass. So it's a labor-saving technique as well. I need that kind of help.
Undoubtedly, due to my photosensitivity, part of what is behind my aches today is having been out in the sun, even though my raking was done late in the day when most of the area I was working on was in shade. Just the drive to Lowe's and Michael's in the bright sun was enough to set off the fatigue and aches. Lupus is like this. One has good days, not so good days, bad days, and awful days.
Everyday tasks like getting dressed, taking a shower, even getting out of bed take longer almost every day. When I stand up from my bed or chair, I have to just stand there for awhile, sometimes as long as a minute or two, because the joints simply don't want to bend. In case you haven't noticed, they gotta move to walk. The 10' or so from my bed to the bathroom can take nearly a minute once I do start to move. Going to the kitchen to fix a bowl of cold cereal takes 3-4 minutes sometimes.
So why do I care whether other people understand my illness? It is not just me. It's a million Americans with lupus. Most of us don't "look sick." 90% of us are women. African-American women are 3 times more likely to develop lupus. They have an earlier onset, on the average, and more severe symptoms. Many people who do not understand the disease take us for being lazy or unwilling to work. Others expect us to perform at the same level as people without illness. A Social Sedcurity paid doctor I was sent to see in about 1995 during the application for SSDI said I should be able to work because I was "educated." OK, he had a point in that nothing was wrong with my mind. Still isn't anything wrong with my mind (although some lupus patients do suffer from brain involvement). What he ignored were the following facts:
1. Sudden, overwhelming fatigue made me prone to falling asleep at work, even after a full night of sleep. Employers love
that SOOOOOOO much! Another thing they love is employees who run out of steam, regularly, after anywhere from 2 hrs
after starting the work day to 6 hours. I haven't seen many workplaces with nap rooms, have you? Driving is hazardous
when you fall asleep abruptly too. Then there were the days I made it through the workday, only to walk to my car and fall
asleep as soon as I sat down, too tired to drive home.
2. Unpredictability about when the really bad days will happen. I worked as a programmer for IBM. One thing programmers
live with is deadlines, as do many other occupations. So naturally employers are just wild about having employees who
might have to cancel the last day before a deadline due to the inability to get out of bed, get dressed and get to work
because of pain and fatigue. What do you do when all those little joints in your feet are so swollen that you cannot put
shoes on your feet?
3. IBM was also big on meetings. The facility I worked in was huge, and the meetings were often at the other end of the
building. How do I get there when I don't have a motorized wheelchair and I cannot propel myself because my shoulders
are aching, and the effort wears me out? Even on days I could walk to the meeting, by the time I walk there, I was
exhausted, making focussing difficult and sometimes resulting falling asleep during the meeting. The little twerp who was
my supervisor (and he was a twerp) was sitting beside me once when this happened. I think his assumption was that I had
been up late the night before drinking or doing drugs. Not that he ever asked. Not that I could have told him either because
at the time of this incident, my lupus wasn't diagnosed yet. I knew SOMETHING was wrong with me, as I have always been
in tune with what was happening in my body, but not WHAT.
4. The onset of the fatigue, the pain is sudden and unpredictable. I would go to work feeling fine, in those early days, and
suddenly I would be too pooped to pop, or in such agonizing pain all I wanted was to get home, take some ibuprofen and
go to sleep until the pain stopped. I certainly was no longer capable of productive work. Employers don't like that.
5. Other people were dangers to me, especially people with children. Shocking to say, but there are those who go to work
with the flu, or whose children have the flu, and they are carrying the virus. Exposure to them was dangerous to me. A flu
episode could set off days, or weeks or even months of fatigue and/or pain beyond the level I had learned to live with. Every
flu episode had the potential to develop into chronic bronchitis or pneumonia. Employers don't like people who are out sick
often. These days, they don't like people whose healthcare costs are high.
I actually had a former welfare department worker (in charge of assessments of eligibility) tell me in an AOL chat room that he thought "lupus was a made up illness used by lazy people as an excuse not to work." This was around 2004, and it was clear to me that he was speaking primarily about Black applicants. He never met the beautiful sister of my friend Theola Petteway, diagnosed with lupus at 14 and dead from it at 26. He never saw her, as I did, laying in her bed sobbing from pain, with both her sister and I helpless to ease the pain. He never saw her struggling to work as long as she could, as often as she could. He never saw her applying for welfare either, because when she could no longer earn enough to support herself, her family, in particular Theola, supported her. He never saw me as an applicant either, because my family supported and continues to support me. However, for every Black woman who found herself with no other resources to care for her child(ren) after being diagnosed with lupus and had to sit before him listening to him spout his ignorant, racist crap, I hope he rots in hell on earth and then in Hell after death.
The hardest part of SLE sometimes is not the illness itself. It is the incomprehension of others. The expectations. The assumptions about our character. The humiliation they seem to expect us to accept in order to get healthcare, disability, employment, financial support. The hardest part is having a world that neither understands and acce