Living with lupus for more than 30 years
Having been diagnosed with lupus when I was 23, I quickly learned that a good relationship with my physician is very important. I tried a number of doctors and finally found one who took the time to discuss my disease and its complications with me.
My biggest challenge was overcoming chronic fatigue. As a mother, I realized that I would not be as active with my kids as I always wanted.
Marilyn, Philippines
Whenever I feel like I can no longer endure the physical pain and the heartache lupus imposes as it devours my entirety, I tell myself when I die I'll go to heaven because I have lived all my life in hell. I get a kick thinking that. Then I cry.
It has been over a decade since I started to live a hard life, hoping lupus would leave so I would be whole again. A lot older now, I have learned to accept the heartbreaking reality of being forsaken by a loved one, of missing out on sun-drenched landscapes, of giving up a dynamic and rewarding career, of smiling when tears are about to fall and of getting used to a myriad stinging pain 365 days a year. My lupus has prevailed but I have managed to keep going.
I face tomorrow with a little more confidence, as I live only for the day. I still need reassurance that I am accepted after what lupus has made of me but if people are unable to understand or if they hold back affection, I am not hurting anymore. My journey to reality is extremely personal. I have driven through unending highways, took sharp and sudden turns when I shouldn’t, maneuvered myself out of dirt and rough roads but pulled over when I was too exhausted to drive any further.
I am amazed at how I have survived some tricky lupus ordeals with hardly any visible bruises. I truly am thankful to the Almighty. These days I drive leisurely although the avenues are dark and rain pours incessantly. Uncertainty hovers but only to add spice to living. Life has not been a party I had hoped for but still I dance. My lupus smiles in agreement.
Sophie, United States - Iowa
When I was first diagnosed with lupus, nearly 43 years ago, my father gave me some advice that I have always followed. He told me that no matter what obstacles should occur in the future, I would need to "roll with the punches, pick up the pieces, and never give up."
His wise words have helped me survive through some very difficult times. I have been given the last rites on three occasions, survived 35+ surgeries, a heart involvement which led to a heart attack, fevers of 105 degrees (where I was placed in huge tubs of ice to break the fever), a kidney involvement, peripheral neuropathy in my feet, a life-threatening lung involvement, degenerative arthritis in the spine, osteoporosis, 160 mg. of prednisone daily, extreme fatigue, crutches for two and one-half years, pleurisy, weight gain of more than 80 pounds, loss of nearly all my hair, skin rashes that resembled neon signs ... all, in some way, related to my lupus.
I have had numerous "punches" in my life; however, each time I have managed to "roll" with them ... pick up the "pieces" and gone on with my life. I am extremely fortunate to have had excellent and caring doctors, blessed to have a very supportive husband, and family and friends who have been my moral support throughout the years.
Nele, Belgium
Hi, I’m Nele. I am 32 years old and this year I’m celebrating the 10th anniversary of my diagnosis of lupus nephritis.
I was just married and had started teaching when I was confronted with the symptoms of lupus. My joints bothered me all day and I was extremely tired, which was not normal for a young girl. Long and severe treatments challenged my illness for several years, until finally in 2004, my lupus stabilized, and I have been quite well now for about three years. This is, of course, if I don’t forget my medication! Despite the lupus, I still have two wonderful children, and they give me so much joy in life.
Of course, I am confronted with this chronic illness every day. I still find it hard to combine a job with taking care of the kids and the household. The fatigue is always there and I have to plan all my activities very carefully. So I decided to stop teaching. On the other hand, I found a way to make myself useful for other people with rheumatic conditions. I am very active on national and international levels, and try in many different ways to improve life for people with all kinds of rheumatic diseases. My husband and the rest of the family support me for 100% in this, as they notice it makes my life far more valuable!
Sometimes I smile and think I am even a little glad I got lupus, as I have loads of wonderful friends around the globe now and I can travel a lot, which would not have been the case when I had been in class. But of course, when the fatigue gets me to bed again, I just wish I could be as 'normal' as the rest and do all fun things in life like sports too!