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Lupus

Living with a Lupus Patient

How does it feel to live with a lupus patient?

Much like the fable wherein six blind men encounter an elephant and each man feels a different part (trunk, tail, leg, etc.) and then describes (vine, snake, tree, etc.) something akin to their particular experience, so too would the descriptions of the experiences of “living with a lupus patient” vary depending upon who the lupus patient was (their mother or wife, their child, sister, etc.) and then who was being asked. Other factors that would obviously influence what they would describe depend upon the stage of life of the lupus patient, the state and extent of their lupus and any degree of disability or complications that exist. There are, however, a number of almost unavoidable and universal “Spectrum” of feelings and emotions and challenges that any one living with a lupus patient will, of necessity, experience and hopefully work through and master (I’ve added a few suggestions to that end).

Everyone who lives with a lupus patient experiences at one time or another the following: worry, concern, anxiety and fear, uncertainty, confusion, hope, despair, guilt, a sense of hopelessness and helplessness, an urge to help, an uncertainty as to... what to do, a conflict over what to believe and what not to believe, and what to say and do, and what not so say or do to their “lupus live-in.” Everyone living with a lupus patient struggles to control their frustrations and emotions, since they certainly don’t wish to contribute even more “lupus live-in.” On the other hand, there are times they must control, their anger and hostile urges when the lupus patient can tax their self-restraint and push them to the wall (so to speak).

The lupus patient can and often does withhold information and feelings, alternating with misguided projections to their loved ones, such that on one day they are one BIG PAIN IN THE BUTT, impossible on another day, and yet on still another day they may be brave, thoughtful, reasonable and induce confusion and guilt in their loved ones.