It’s A Shame

I’ve never felt shame regarding my lupus.  Although I do understand how someone might feel ashamed of having lupus.  Not that there is any reasons to be ashamed of having lupus, any chronic illnesses or  any invisible illness.

You might wonder why someone would feel shame for having an illness.  In and of itself it isn’t the illness that brings the shame usually.  Instead the shame comes from watching others do what you no longer can while you are in a flare.  It may be the amount you sleep or even how your appearance has changed.  It could be the brain fog that makes you feel ashamed.  Ashamed that you can’t remember things you really should.

If you require help, special consideration or such it is easy to feel shame.  Especially if your lupus isn’t all that visible.  For example say you need parking accommodations, not because you are in a wheelchair, but because you cannot walk far.  So you get your parking placard, screw up your courage so you use it and park in a designated area only to have people stare at you.

The list goes on.  And you really don’t need to feel shame for finding ways to make your life easier.  Nor should you feel ashamed for getting back some of your quality of life.  After all, isn’t living with a chronic illness like lupus more than enough without shame added to the mix?

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Of Strangers And Sunburns or Boy Was My Face Red

To the lady at the grocery store, yes I was aware my face was red, especially my cheeks.  I’m sure you thought well when you decided to offer me some “quick and simple” tips to prevent this in the future.  And I’m just as sure you’d ‘appreciate’ a stranger coming up to you in a public setting to offer advice on to not “look so awful” in the future.

Perhaps you thought I was hard of hearing as you discussed how sunscreen works.  Perhaps I struck you as confused when you explained that gently applying the sunscreen in a circular motion would ensure I would have even coverage that was blended into my skin.  And I’m positive the other shoppers appreciated your lesson on how those little SPF numbers work.  It’s a shame you couldn’t remember that SPF stands for Sun Protection Factor because that would have made the lecture more complete.  But you did try, so there is that.

The thing is, kind stranger, I have lupus.  This isn’t a sunburn.  It is my body trying to put on its own version of a visual display.  It is displaying that al is not well in my body. The red cheeks you found so “ugly” area sign that my immune system is attacking my healthy tissues again.  Shame it doesn’t display exactly which tissue or organ is being attacked.

Yes I wish the display was something more beautiful, you know the way some birds have special plumage ey use for display.  But I don’t have special plumage. I just have a super immune system that gets bored easily and attacks my own body, just to keep its occupied, or maybe to prove how strong it is.

Please understand the only reason I stood there while you gave me the advice was because I was tired.  I had already stopped I front of those products when you came by.  I was waiting for Beloved to finish grabbing two items so he could join me.  I wasn’t so much waiting for you finish explaining to me the art of sun protection because I live that art all the time.

You may have noticed my pale skin.  That’s from sun protection and not just sunscreen either. You see, dear stranger, I practice the art of extreme sun protection. I cover up so as not to expose myself to sun.  Yes I’m that woman wearing a light oversized shirt with full length pants and a huge hat while you are outside in shorts and a sleeveless shirt. I’m a master at finding shade, although clearly in your eyes the only reason I had an “awful, red face” was because I had managed to get a “sunburn from misapplied sun screen.”

Next time you wish to be so helpful, before launching into a lecture you may want to consider how would you feel on the receiving end of it. You may also want to consider that you may be commenting about something you know nothing about, as the man who approached told yo as much. That man, who was irritated by your need to ‘educate me’ was Beloved.  And he could see I was tired.  Because you see, dear stranger, he is educated in what it’s like to live with someone who has lupus.  And he could see if we didn’t finish up soon our vehicle would be in the sun.  And none of us wanted me exposed to more sun.

The Day My Disease Caused A Moment Of Unease

One of Beloved’s co-workers stopped by the other day.  I had ever met this man before.  I happened to be at home when he stopped by to get few documents from Beloved.

Because I wasn’t going anywhere and we weren’t expecting anyone, I didn’t bother with covering up my stunning butterfly rash.  It was a sight to behold, in all of its glowing rashness.

Naturally, after being home for a few hours already and no one stopping by the house, I sort of forgot about my appearance.  I know, hard to believe, but I can actually forget what it looks like.  So naturally I was the one who was closest to the door when the bell rang.

Of course I answered the door in all my lupus glory. I mean I radiated all the stunning side effects of lupus.  Swollen joints, rash.  My hair looked so bad I almost thought had mange.  Oh and I was sporting some lovely deep purplish red bruises on my arms and neck.  He bruises are a side effect of my medication.

Now that I’ve painted this beautiful image for you, perhaps dear readers you will understand why this poor, unsuspecting individual recoiled led in horror as I greeted home with a “yes”.   Not his fault.  He wasn’t warned there was the making of a horror story behind that door.

After he struggled to regain his composure he asked for Beloved.  I invited him into the house while I went to find Beloved, but this man was smart.  He opted to wait outside least he should catch whatever fresh hell had infected me.

Beloved and this co-worker chatted, finally inside.  Documents were retrieved and shared and this man apologized for his reaction which he said he hoped did not cause that much discomfort to me.

The fact is when you have a disease such as this, or a terminal one, you create dis-ease or discomfort for healthy people.  We reminded that  bad things can happen in the blink of an eye.  That life is fleeting.  No one knows what to really do with us, or what to say.  And for some reason I feel guilty for causing this man distress.  When in fact it is just a fact of life and we should all be able to meet each in the middle.

Reflections

When you stare in the mirror do you see what you want to see or what other people see? When you look at your reflection is it an honest, fair look or have you already made decisions about your appearance based on your internal voice?

When I gaze into the mirror what I see is framed by my own ideas/concepts and such of what I have for and of myself. I have no clue what other people say, although I can assure you my eyes are never going to resemble bodies of water. They may get watery, but they aren’t going to be the North Sea. And yet that’s what Beloved sees. (He may need to get his eyes checked, but that’s another story.)

What the voice inside my head tells me most certainly colors how I perceive things, but I’m also aware that the voice is one of an internal critique and so I temper what it says with kindness. Kindness that I would easily give to another and yet find so hard to provide to myself.

Mostly though when I look in the mirror it’s to make sure I’m presentable to face the world or the day. I don’t give it much thought beyond that.

 

Self-conscious Insecurities

Without fail, on the days when I need to look pulled together and polished everything seems to conspire against me.  I positive my hair brush and blow dryer spend time ng how to give me the  most creative hair styles that could double as modern art sculptures.

Wrinkles that have been ironed out of clothes the world over manage to find their way into my clothes where they are basically permanent a part of the clothing.  And if I manage to get the creases out of the material chances are I will spill something on myself prior to going in public.

The four-footed one likes to help out as well.  She will rub up against me to help share her lovely fur coat with me.  She will find something smear her face in and then try to share the smear with me.  I mean who doesn’t want to share a smear?

So what’s a girl to do when it seems everything is considering against her to look presentable.  Well, she can hide from it and avoid all public appearances.  Or she can make the best of it and work with what she has.  Basically own the disaster as it is an intended effect.  Which tends to be what I do most of the time.

Beloved will assure you that my hair has yet to even remotely resemble modern art even when I swear it does.  The four-footed one?  Well we both have her fur on our clothes.  Wrinkles happen,  it again Beloved will tell you the wrinkles aren’t nearly as bad as I say.  So how is it that we see things so differently ?  Because when these moments are happening to me it’s my insecurities coming out.  And knowing that helps reduce the self-conscious  that comes with those insecurities.

What Does It Look Like

What does lupus look like?  What does a person who has lupus look like?  Could you identify a lupus survivor?

Eye patches, artificial limbs, or other easily sighted signs aren’t the norm with lupus.  We aren’t required to wear special outfits, signs or other indicators of our illness.

Most lupus survivors try to live normal lives.  They work hard to be normal, which is exhausting work.  Most just want to get on with living and enjoy the good moments.

Telling us we don’t look like we have lupus is not only hurtful, it’s disrespectful.  It hurts because often times lupus takes a long time to get diagnosed and in between that time you may hear that “it’s in your mind” or that you are making it up.  And this is from those medical people you’ve sought assistance from.  There is a huge relief once you get a offical diagnose and the medical world starts to treat you.  There is hope.

It’s disrespectful because most people who say this have no medical training and come from a place of ignorance with this statement.  It is an utter lack of respect for the diagnosis as well as treatment and the person who owns that.

Perhaps if these people could tell me home I’m supposed to look I could make that my priority.  That way maybe, just maybe, people would get it.

So what does lupus or any other invisible illness look like?

Nailing It

I chipped a nail today at work.  I know, drama and trauma right?😉

As You may know, I tend to grow mine out to what my mother called “respectable lengths for a lady” and the cut them when it’s too much.  Don’t worry, they grow back!😊

It wouldn’t have bothered me except that it chipped along the side of the nail, rather deeply.  Which means it hurt.  Which means I wasn’t impressed.  It also mean it bothered me all day long.

Now out of all the stuff going on in the world, it’s a chipped nail that bothers me? Something isn’t right!  Sure it hurt, sure it looked odd.  sure it even got stuck in my clothing and scrapped my skin.  But I wasn’t facing what lots of people face just to survive, just to meet their basic needs.  I meant,it’s just a nail.  I don’t even care that much and yet there it was, my focus.

A friend pointed out that most often I worry about and focus on world issues.  I’m worried about things like social justice, equality, and such.  But I’m human so now and then I can’t help but be focused on the me stuff.  Still im not sure how this happened or why it bothers me so much.