Misdiagnosed for more than four years

Martha, United States - Ohio

I was diagnosed with SLE almost 30 years ago, in 1978. I was 23 at the time. It took 3 years and many hospitalizations before I finally had a diagnosis. I spent many weeks in a hospital bed and there wasn't a simple answer as to what was wrong. The tests for lupus didn't necessary correlate with the severity of my symptoms and still don't to this day. Luckily, I have surrounded myself with caring, knowledgeable physicians who understand how things work for me.

My biggest challenges have been to accept the limitations that this illness puts on me. I would love to plan an event in advance and know that I will have a pain-free, energy filled day. Fatigue, joint and muscle pain never seem to abate, even when I am considered to be in remission. I would love to be outside, in the sun, with my family on a nice summer day, but I know that would end with a flare of symptoms. While I am grateful that my illness doesn't always show in the way that I look, I wish others would understand when I say I feel terrible, but don't look sick. I know other lupus patients can relate to this.

If I could change one thing about living with lupus, it would be the medications that I have to take. I currently take 13 prescription drugs daily, some of which I take to counteract side effects of others. Prednisone is a wonder drug, but causes many side effects that are not welcome. Weight gain, moon face, buffalo hump, along with bone thinning are just a few of the side effects that we all suffer from with this drug. If only researchers could come up with something with "nicer" side effects!

Deborah, United States - California

I started to get sick all the time at age 18. It wasn't until 10 years later when I was 28 that I was diagnosed with SLE. So far, I have experienced joint pain, rashes, and my lungs and heart have been affected. I often feel like I have the flu. I was also diagnosed with cervical cancer which you are much more at risk for when you have lupus and are taking lupus medications. I am scared that I might not be able to have children. I am also scared that if I am able to have children, I might not be able to take care of them.

The worst part about lupus is that you can look totally fine on the outside, and be in so much pain inside. Sometimes it is impossible to try to explain this to people.

Martha, United States - Kentucky

It took years and many doctor visits before I was finally diagnosed with lupus. To be honest, I had to almost die first. I had a blood clot blocking off my left lung, before they found out what was wrong with me. I started off with viruses, rashes, joint and muscle pain that could not be explained by anyone. I have systemic lupus, and my symptoms would jump around from one joint, or one muscle to another. I also have cardiolypin syndrome which is part of systemic lupus. That's why my blood stays too thick and its why I had a blood clot.

I worked for 18 years in a local hospital as an RN. I finally had to quit because of my pain and chronic fatigue. My husband and I just celebrated our 31st wedding anniversary. Since I have lupus, I meet many challenges everyday. Having to stop working was the hardest thing I had to do.

After I almost died, I wake up everyday thankful that I was given some borrowed time. Yes, I have lupus. I stay tired and worn out all the time. I deal with pain everyday of my life. But I'm not dead yet. I am so thankful of that.

We do however need to make better tests that can diagnose this disease as early as possalbe. Most doctors, I don't think understand this disease, therefore it is very hard to get a diagnosis. Had I been diagnosed by my first RA doctor, and put on blood thinners, I may not have clotted and almost died.

Karin, the Netherlands

I think my first SLE-attack happened when I was 16. The pain in my lower back, hips and knees was so severe that I could not walk. I felt like I was going to break in two. My mother did not take me to the hospital. As the years went by I experienced more health problems. My knees frequently hurt terribly. My shoulder joints became inflamed but the doctor only gave me painkillers. I began experiencing fatigue that was abnormal for a woman of twenty-something. This fatigue continues to date.

Regardless of my bad marriage I got pregnant and gave birth to a beautiful baby girl. I thank God for her because she supports me completely. After the delivery my hips and knees hurt so badly that I had trouble walking for weeks afterwards. The pain in my shoulders returned and my family doctor prescribed physical therapy which did not help.

In my late twenties I began to suffer hair loss. Neither my doctor nor the dermatologist could determine what caused it. During my early thirties I experienced severe pain in the hips again. My left hip would hurt so much that I had to drag my leg when walking. At the same time "my butterfly" developed. I went to two dermatologists but they did not recognize it for what it was. In February 2005 I had a major attack. For nearly four weeks I hurt literally from my neck down to my toes. Just like 21 years ago I felt like I was going to break but this time into a 1000 pieces! An intern at the doctor's office told me I had influenza. In March 2005 I was hospitalized. It was then that my SLE was finally discovered.

Yaitza, United States - Virginia

At 16, I wanted a driver's license and a date to Ringdance. I got SLE. I was misdiagnosed about 5 times before ending up in the ER, my parents there when the doctors yelled "Code blue." I had chemotherapy for over a year. The administration at my high school wasn't helping me with AP classes; I finished schoolwork during treatments against my doctor's wishes. Photosensitivity, constant fatigue, and the side effects of countless medications to suppress the disease came along.

My biggest challenge: looking in the mirror. I was a slim 135 lbs, a mere 100 lbs when released. Months of recovery brought me back to a normal 140 lbs. Prednisone blew me up; I had the moon face to prove it. My constant struggle; be healthy or look better? My high school wanted to kick me out; I wasn't meeting attendance due to visits & treatments. My parents struggled with hospital & insurance bills. My sisters had to grapple with the idea of death at a very young age. My husband sees the pain when flares come back, when medications cause side effects that are painful for me to bear, sees the fatigue, and the struggle with the mirror. They stick by me; I don't know where I'd be without them.

If I could change one thing it would be the severe lack of awareness. I had never heard of lupus until my diagnosis and it took months of research to finally become aware of what I would be dealing with. It's hard to know that I may look healthy on the outside, but am always hurting on the inside. I have dealt with it; I know I have lupus but it doesn't have me.

Aleli, United States - California

My name is Aleli Tan. I am a single 41 year old Asian female, diagnosed with SLE in February 2003. Before my diagnosis, I have been back and forth in the hospital for chest pain, low to high grade fevers and joint pain. I was diagnosed different ways from costochondritis to congestive heart failure. My fever of 101 degrees would not lower for 3 days and my potassium level was severely low. After extensive tests, I was finally diagnosed -- with stage 4 lupus nephritis. I underwent a lot of medications including Prednisone, IV Chemotherapy (Cytoxan) for 6 months. And currently taking Mycophelanate - 600mg a day.

I am currently in fair condition. Holding a full time job. Although I have to excuse myself through reduced working hours specially during high stress seasons at work. I work in a fast paced design/publishing company and mental stress wears my immune system down. Aside from myself, a first cousin of mine, of the same age and gender, was diagnosed with the same thing. The sad part is, she lives in our home country -- the Philippines, where medication is not adequate and affordable. One of my immediate goals in the future is to work on my remission so I can volunteer my time for other lupus patients in need.

Wynter, United States - Ohio

I have CNS lupus. I was misdiagnosed for about four years. I was a law student, with a full scholarship, and I had to drop out because my body couldn't take it. My hands shake, because of an intention tremor. I fall a lot. My vision has deteriorated because of neuritis and optic neuritis. When my joints ache, I hurt so badly that I want to die. I recently developed an SCLE rash that nearly killed me and I just spent 21 days in the hospital. I'm still swollen from prednisone I have to take, which is destroying my bones. I have two children: an 8 year old autistic son and a 5 year old daughter in kindergarten. It's hard to tell them that Mama can't come outside in the sun with them, that Mama is too sick to play with them, that Mama is at the doctor or hospital again, that Mama can't tie their shoes because Mama's hands are shaking too hard. I'm terrified. I feel like I’m losing myself, what defines me, piece by piece, to this disease, and I'm only 38 years old.