One Patient's Positive Perspectives

We all know someone who does not understand lupus...

We all know someone close who does not really understand or believe that we have lupus.  Perhaps a well-meaning person who cares about us, even deeply.  This can really hurt.  The hidden nature of lupus, with it’s mostly invisible symptoms, contributes to others’ difficulty in acknowledging the chronic auto-immune illness we battle.  Unfortunately, they just do not and cannot “get it.”

Dealing with feelings

So, what can we do about the way their denial of our illness makes us feel?  Should we resent people who do not understand that we have a real and potentially serious auto-immune disease?  Should we be angry with them for not understanding lupus has unseen symptoms?  Should we try to convince them we are really sick?

None of these three responses will really help us feel better.  The negative fruit of unresolved anger and resentment hurts us more deeply than it hurts the human objects of these feelings.  Instead, perhaps we can understand why some people will never understand lupus.  These people simply lack something that would permit them to understand.  We need to come to terms with this realization. 

In this thought is also a hidden opportunity to keep lupus from defining us, and to allow people to relate to us outside our illness.  Lupus does not have to be a frame of reference for everything in our life, including the people around us who do not understand lupus.  Refusing to let lupus take center stage or become a focal point in our life is critical in finding life-balance and a healthy set of perspectives toward our illness.

Already members of our support team...

Be thankful for those who do understand 

Most people we know who are able to understand lupus may already be the key members of our support network.  They are the existing crew comprising our cheering section, rooting for us and praying for us through the struggles we face.  We find them to be empathetic, caring, patient, supportive, encouraging, listening, insightful, inquisitive, teachable, well-informed, helpful and at times quite selfless.  We need them and are grateful for them, but not everyone can “be” them.

Attempting to move people into this camp may not be worth the effort required to transform their behavior and outlook, if it is even possible!  It might even drive us crazy if we try.

Lupus symptoms are deceiving

Others tend to look at our outside appearance.  They may see rosy cheeks and prednisone induced perkiness and plumpness.  It is easy for onlookers to mistake these outward lupus symptoms as signs of health.  We may feel horrible on the inside, while at the same time looking quite healthy on the outside.  Thinking about us as “sick” just doesn’t compute with their subconscious minds.  The conclusion of many is that if we don’t look sick, we can’t be sick.  They believe sick people should always look sick.

People are looking at us, not at our lupus

For example, there is a dear friend of mine who does understand and care about my battles with lupus.  However, she seems embarrassed to confide that from time-to-time she completely forgets about my chronic illness.  She says she has a hard time thinking of me as a “sick person,” and tells me “you don’t act like a sick person.”  Yet, she is comfortable talking with me about some of my deepest lupus-related fears and challenges, and she is someone I really trust.  She gets it.  But, lupus is not what is on the forefront of her mind when she interacts with me on a daily basis.

My friend sees me, not my lupus.  She is busy being my friend, and she is mostly not thinking about my lupus.  We have wonderful chats about so many things – sometimes about our work, family, children, aging parents and spiritual things.  Her forgetfulness somehow encourages me, and reminds me of the difficulty many other people have in seeing and understanding lupus.  It is not their fault.  Lupus, and its very nature as an invisible chronic illness, are part of the reason.

Lupus is not the only thing

Perhaps we should be encouraged when we realize that our illness is not preeminent in a relationship!  Lupus does not need to have that kind of power over our lives, and it should not become the center of everything.  We should not want it to be.  That would not be healthy!  We should be glad when we observe it taking a back seat to other, more important, aspects of our lives.  It has enough unwelcome intrusion into our life, so we should not give it more any focus than necessary.  Lupus is not the only thing, it is only one thing in our lives.

Casual onlookers cannot see hidden aspects of lupus...

Lupus symptoms are invisible

We should recognize that the casual onlooker just cannot see the hidden aspects of lupus that we experience throughout each day.  They cannot see our joint pain, malaise, difficulty thinking clearly, other cognitive deficits, fatigue, mouth and nasal ulcers, anemia, kidney failure, blood clots, neuropathy, pericarditis or pleurisy, dry mouth and dry eyes, makeup-covered rashes, fevers, or other symptoms.  Most lupus symptoms are invisible, and some people just cannot believe in what they cannot see.

The fact that we may try to be as up-beat as possible about our illness, so that we will not be perceived as a constant complainer, doesn’t help others see our lupus better, either.  But, we should still try to be as positive as is reasonable, for the sake of our own spiritual and mental health.

Co-existing illness and happiness create a paradox

Some people will never understand how a sick person can feel miserable, while at the same time she also demonstrates a joyful and zestful attitude toward life.  Such contrast is a paradox to them.

We may want to consider that some people may just be unable to deal with the fact that we have an incurable chronic illness, and that we are suffering.  It is painful to them to think we continue to be sick.  It is more comfortable for them to to deny it than to try to think about the details of our prolonged battle with lupus.  They may care, but cannot handle our  illness.

Coming to terms with lupus unbelievers

There are a couple of things we can really do to help ourselves come to terms with the lupus “unbelievers.”

First, we can decide to accept the fact that there will always be people around us who cannot see or understand our lupus, and that they never will.  So, after accepting that idea, we are left with only two real choices.  Either we can choose anger and frustration toward these “unbelievers,” or we may choose to forgive them for their limitations.

Extending forgiveness and acceptance

If forgiveness presents us with difficulty, and doesn’t come easily, that is simply natural!  It is not uncommon for most people to need help in this area.  With the influence and help of a merciful and forgiving God, a humanly impossible change of heart can become possible.  He can and will help us forgive others if we ask.  Jesus Christ told one of his followers that forgiving someone seven times was inadequate, and suggested instead that seventy times seven was more appropriate.

We should also consider that many people who misunderstand or disavow our illness still have other great redeeming qualities, and even some of them may have very important roles in our lives.  Although they may frustrate us when it comes to our illness, we can choose to forgive them, and value the contributions they have in the other aspects of their lives.

After all, when we look into the eyes of others (or into our own mirror) we should take a moment to remember that the person looking back at us is quite imperfect!


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