When I received my initial diagnosis of Systemic Lupus Erythematosus, my first reaction was relief. I had been feeling unwell for several years; the year leading up to my diagnosis was one of the worst in my life. For more than a year straight I woke up feeling like someone had beaten me up the night before…
My blood count was so low, it was at the level where doctors recommend a transfusion, and I had arthritis in all my joints. Simple activities like standing up were incredibly difficult. I dreaded having to go to the toilet because it was so painful just to sit down and then get back up. The stairs were like some kind of evil torture device, yet I continued to take them every day. I would tell myself, “you need to stop being so lazy.” Before my diagnosis, I chalked all the symptoms up to laziness and low pain tolerance. At no point did I consider that it wasn’t normal for a 25 year old to feel so rundown all the time.
Someone sneezed in my face during calculus class one day, and I caught their cold. Weeks later, the cold had turned into pneumonia and I missed two weeks of school. Still, I didn’t think anything was really wrong with me until one of my professors suggested I might want to see the doctor. The results of the lab tests were swift. My low blood count was not due to low iron. I had been prescribed iron pills months before, so my iron was now high… yet my blood count was still hovering around the dangerously low levels. The doctor ordered further testing, and after a positive ANA test and positive anti double stranded DNA test, a positive anti-SM test, low complement levels, and a physical examination which showed joint inflammation and the trademark butterfly rash across my face… I was diagnosed with Lupus.
“What is Lupus?” I asked the doctor who diagnosed me.
She explained that Lupus is an autoimmune disease. My immune system mistakenly attacks healthy tissues and organs, causing damage. Cases can range from mild to severe, and there can be any level of organ involvement. She told me that the vast majority of cases are restricted to the joints and skin, and can be easily managed with daily medication. She then explained that I would have to see a rheumatologist for all of my care in the future. Systemic lupus patients are typically managed by a doctor who specializes in internal medicine, and not by a regular family physician.
One week later, I had my first appointment with the rheumatologist. He explained what lupus was. His explanation was a reiteration of what the first doctor had said. He scanned through all the pages of my lab work, and then he wrote out requests for about 25 more lab tests. He said he wanted me to get them done as soon as possible.
On my next appointment, I asked him if he was entirely sure I had lupus. He looked up at me in surprise and said, “This is one of the clearest, easiest to diagnose cases of lupus I’ve seen. The college of rheumatology has 11 criteria for diagnosing a patient with SLE; to get a diagnosis you need to meet any 4 of the 11. According to your labs and medical history you meet most of them.”
He then looked back down at my lab report and started rattling off a number of additional tests I needed to get done. At this point I was a little overwhelmed. He told me that I had lots of bad antibodies in my blood…the kind that mean serious organ involvement. The antibodies found in my blood are an indication of which organs are being attacked by my immune system at a given time. There are no ambiguities in this type of lab test; if the antibodies are detected that means that the organ is currently being attacked and is in danger of becoming damaged. I was referred to the kidney doctor, because I had the antibodies in my blood that indicate kidney involvement and a urinalysis had turned up too much protein in my urine…another clear indication of some type of kidney involvement.
After more labs and more blood tests, and an ultrasound of my kidneys, it was determined that I had kidney disease due to the lupus. For the next year, I took more than 30mg of a corticosteroid called prednisone every day. This medication got the kidney disease under control, but there were lots of side effects.
My initial bout with kidney disease was just the beginning. In the years since then, my list of serious complications has grown and changed in some distressing and unexpected ways. After struggling with knowing what to tell people when I need help or rest, I now have the answer to the question, “Is it serious?”
When someone asks me this, my usual response is general. I tell them that lupus can be serious for some and not so serious for others. I guess I don’t want to reward people’s curiosity and good natured concern with the harsh facts of my case. If I were to be honest I would say that it is serious. It is very serious. Based on my lab work and my personal list of complications that I’ve been diagnosed with, it is very serious. I’m very photo sensitive, so the UV radiation from the sun and even from fluorescent lighting makes me sick. I spend so much time alone at home because I don’t feel well, and I know my body needs extra rest. For me, not feeling well encompasses a myriad of things: extreme fatigue, upset stomach due to liver inflammation (vomiting, diarrhea, and lots of pain and discomfort when I eat and/or take my meds), inflammation in my joints that causes so much pain that I limp around like a senior citizen, severe chest pain due to pleurisy, pericarditis, and my disease attacking my pulmonary artery (this is the one that scares me most), headaches and vertigo due to central nervous system involvement, and sometimes plain old sadness.
These are things that I will have to manage for the rest of my life. Now that I have been told I have heart disease and I’m at elevated risk of a heart attack or stroke because of what this disease is doing, what my own immune system is doing, I can no longer deny the seriousness of my condition. Lupus is way more real to me now, than it ever was in the past. It was easy to ignore the kidney disease, because it progresses so slowly and with so few symptoms, but I can no longer ignore everything else that is going on. I am not in a panic, but I have fully realized the gravity of this disease. I am in a fight for my life, but this is not the kind of fight that draws out the spectators to cheer you on. Lupus is not like cancer.
When someone tells their friends and family that they have been diagnosed with cancer, there is immediate support and understanding. No one asks, “What is Cancer? Is it serious?” The Cancer patient embarks on a journey that is very much like the Olympic 100 meter sprint. For a short amount of time, a few months or years at the most, the cancer patient is in an all-out sprint for the finish line, and death is sprinting in the lane next to them. Their families and communities are on the side lines cheering them on. If they beat the cancer, there is celebration with everyone watching, and if they do not cross the finish line first, everyone mourns them as a hero.
Systemic Lupus Erythematosus is serious in a completely different way from Cancer. Lupus is more like a marathon one runs alone in the woods. There is no finish line; there is only the knowledge that you cannot run forever, and eventually the complications will catch up to you. Few people understand the struggle, the daily grind, and the eventual wearing down of your body and your emotions. Death is still there running beside you, a constant reminder that the moment you become complacent any number of things will go catastrophically wrong. Everything that is affecting your stride requires a lengthy explanation, so it’s easier to run this race virtually alone rather than having to explain everything over and over and over again. It is easier not to have your explanations be met with open skepticism. It is easier not to have to answer the question, “Is it serious?” when to most people it doesn’t look serious at all.