50 Shades of Lupus

Ines Martins, PhD avatar

by Ines Martins, PhD |

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My Mountain, My Lupus column

You’ve probably heard of the book 50 Shades of Grey and you’ve more than likely figured out that it is code for “50 Shades of F’ed Up.” Interestingly enough, that phrase truly describes my being diagnosed and  having to live with lupus.

Every day is a different shade of grey.

Sometimes it’s a bright shade where I can step outside and feel a little bit of sunshine on my face. Other days it’s cold and gloomy like a pain that starts in your lower back and radiates from your toes to the tips of your hair. Yes, some days even my hair hurts (what I have left of it).

This holiday was extremely difficult for me, as I am sure it was for a lot of us lupies. Traveling becomes more and more difficult as family members are less than stellar in their support.  They have no idea of the aches and pains we go through and the meds we take to try to alleviate them. If I had a nickel for every time I said the obligatory “I am doing great. How about you?”, I would be richer than the author E.L. James.

How many times can you really say, ‘I feel like crap,’ and still have people around to ask again tomorrow?

Lupus is honestly about 150 Shades of F’ed up, but without it I wouldn’t be me. I wouldn’t have realized how much I had taken for granted in the past. How much others take for granted. I used to have a Rolodex of people I considered close friends. Now, I can count them on one hand. Except now I appreciate those five more than I ever did that 100.

I spent Christmas alone and in bed.

My kidneys have been acting up since we moved coast to coast three months ago, and  I haven’t been able to get in for a real doctor (save for the ER) visit. Some might read that and think “poor girl, alone for Christmas,” but I don’t say that asking for pity. I say it so that others out there know you aren’t alone. There’s a whole group of us going through the same thing.

While my mouth says what everyone wants to hear, my brain screams the obscenities I’ve been longing to say since the day I was diagnosed. I am so tired of pretending to feel good so that others don’t feel uncomfortable. What is it about terminal illness and death that make people so uneasy? It’s as if they would rather pretend we aren’t slowly dying than to acknowledge and embrace the time we have left. It’s as if they are the ones living with the fate of what we have been dealt, and it becomes about them and not us.

If I said to you I have accepted my fate and that lupus will do what it wants, when it wants, would you say to me, “Don’t talk like that. Its morbid.” Would you see how confusing it is to have this disease? To feel good one day and then feel like you were hit by a bus for the next three?

The holidays are times when I long for the peace of not knowing what I have. I also can be thankful in the knowledge that after five years of waiting, at least I have a diagnosis.

Like I said, 50 Shades of Lupus.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.