It was 2016 and I was 23 years old when I was diagnosed with systematic Lupus Erythematosus. My opinion has always been that illness is something that comes and goes. You may get sick for days, a week or two but after that you’ll feel well again and continue carrying out with your life without the stress of sickness. Lupus is not only chronic but seems to get worse. It doesn’t get any better from my own experience and some of the stories I’ve read and heard, there’s is little hope for patients of lupus. I’m also battling lupus nephritis. It has been the biggest scare for me so far as it affects the Kidneys and might lead to Kidney failure in future.
Lupus has affected my life both physically and emotionally. When I wake up in the morning, I never know if I will have the energy or ability to do what I want or need to do that day. It can be very depressing. My social life and professional life have been adversely affected because I am in too much pain or just don’t have the energy to interact with people. Most people don’t understand that just because we may look “normal” we feel anything BUT “normal.” I lost my very first job for illness reasons.
I take about 8 prescription medications daily which gets very expensive even with insurance. Not all medications are even covered by insurance which limits some of the relief available. I have about 3 different doctors each a specialist that I see several times a year. Some weeks are filled with doctor visits or tests which becomes very tiresome and expensive.