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Learning to live with Lupus

Updated on October 13, 2012

Facing it...

Writing about personal subjects and sharing personal insights and feelings, stories, topics, ideas, feelings, from behind a keyboard, with strangers, seems strange to some, and strikes many as invasive, pointless, and or just plain pathetic, or as just some type of ploy for pity or cry for attention. The truth is, I am not sure what motivates me to share or write about my personal life, or what my motivation is, what my intent is, or intention, I just do it.

I was diagnosed with Lupus several years ago. Lupus is an autoimmune disease that can affect almost any part of your body, including your joints, skin, kidneys, heart, lungs, or blood. Lupus can also affect the nervous system and brain. When lupus is active, symptoms of joint stiffness, pain, extreme fatigue, confusion, or depression can make even simple tasks difficult, and sometimes impossible. Moreover, because lupus symptoms can be unclear, can come and go, can change, and are not always visible, people around me do not realize how much pain I am in, or that I am sick at all.

There are many forms and symptoms of lupus and because it mimics so many other illnesses it is sometimes called "the great imitator," and what makes diagnosing it so difficult. Often times a person is only diagnosed after they develop more chronic, severe, or life threatening symptoms, such as kidney failure or disease or lesions, dependent upon what form of lupus the patient has. At the time of my diagnosis, aside from the chronic fatigue and pain, I developed a skin rash -- a "butterfly" rash over my cheeks and bridge of my nose, which affects about half of those with SLE-a rash that only gets worse when in sunlight.

Lupus is a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better) and can range from mild to life threatening. However, with good medical care, most people with lupus can lead a full life. Lupus is not contagious, therefore, you cannot "catch" lupus from someone or "give" lupus to someone. People generally fear what they do not know or are fearful of the unknown, thus when I am experiencing visible signs of a flare many people shun and or avoid me, fearing they may 'catch' it.

Living with the chronic pain and fatigue and the unpredictable flares is not easy but accepting and recognizing the limitations and constraints can be downright disheartening at times. I have missed weddings, birthdays, and countless other events and or celebrations, which because my symptoms are not always evident or visible, leaves many to feel or believe I am inconsiderate, undependable, unreliable, or ‘flaky.’ Many of my family, friends, and loved ones, have never seen me when I have experienced a flare, or am experiencing one, which is why I find myself second guessing putting up pictures of myself, along with this hub.

It has been sometime since I have experienced a flare up that was visible or noticeable, so when I went to the doctor last week to seek treatment, and everyone in the waiting room was staring and then moved away from me, I was reminded how blessed and thankful I am that most of my flares take place within my body, rather than outside of it. I have just completed a round of Prednisone and with plenty of bed rest; I should be up and around soon. For the past two weeks I have remained home and out of sight, as though I were a prisoner in my own home…too ashamed and or embarrassed to show my face-til now. Some things are easy to hide, mask, and or disguise, not so easy though, when it is 'written' all over your face.

For more information on Lupus:

Lupus Foundation of America, Inc.
2000 L Street, N.W., Suite 710
Washington, DC 20036
Phone: 202-349-1155
Fax: 202-349-1156


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    • raquelpier profile image

      Raquel L Pierson 5 years ago from Lancaster Ca

      Thank you jessefutch, for the vote up, for the kind words, and for the read! I know it is incredibly shallow and vain, but sharing the pictures along with the hub somehow makes me feel more vulnerable. :)

    • jessefutch profile image

      jessefutch 5 years ago from North Carolina

      Thank you for sharing this. I'm sure it took a good bit of courage. Many people just do not have the information they should about this affliction. Voted and shared.