This Is What It Is Like To Live With Lupus

It is as if the real Erin is tiny, frail, and pushing with all her might against skin and bone and fat and muscle to get out.

That’s not metaphorical, it’s how I feel inside my body as I come off these powerful steroids. I am trapped in this stretched and padded frame, pressing hard from the inside.

Pressing and pushing and poking so that my chin moans when I turn my head. The back of my neck, heavy with a steroid hump, screams in pain if I dare attempt to look to the sky.

This is what it is like to live with Lupus.

As I showered this morning, I made a mental note of my growing stretch marks. Purple. Red. Blue. Almost like a hand mark from my back to under my arms. Then again across my back, above my hips, around my very swollen stomach.

This is what it is like to live with Lupus.

It’s hard to get dressed. To make dinner. To brush my teeth. Sometimes the pain, no…the heaviness…is so overwhelming I am hospitalized. I need intravenous drugs to take away the ache that pulses through every muscle and joint. I need to be admitted, overnight, in order to get ahead of the sheer volume of uncomfortable pain that can over take me with one small dosage slip up or weather change. Or infection. Or medication change. Or …who knows.

I just know this is what it is like to live with Lupus.

Tonight I raised my arms to do dishes and winced. Is it the tapering of this strong steroid? Is it the weight that steroid has put on my arms? Could it be the muscle relaxers? Perhaps some break through pain as I try a new fibromyalgia drug.

This is what it is like to live with Lupus.

And as I get the house and family back to normal after my brief hospital stay, I re-asses the calendar. Two doctor appointments on Monday. Three pharmacy runs this week. Juggling school pick-up, kid activities, classroom presentations with my drugs that render me unable to drive, think clearly, and be fully present.

This is what is it like to live with Lupus.

As I type, I take breaks to rest my puffy wrists. I massage my elbow, stretch my fingers, and open another email or two…this way I can read while I wait for my body to recover enough to continue my thoughts. I read messages from family and friends wishing us well, asking why I was in the hospital. I read yet another unsolicited list of herbs or chants or veggies or nuts or fruits I “must” include in my regimen in order to be “cured” of my ailments. I read more about mini-strokes, inflammation on the brain, and what to expect next week in my son’s classroom. I massage my wrists more and then choose to read about the royal wedding. the NHL playoffs, or a pinch of politics- just to get away from the ever-present, ever-taxing disorder that has taken over my body and my life.

This is what it is like to live with Lupus.

It is easy to be discouraged when your body is overrun by pain and medication. When your mind is in constant worry over which organ will be inflamed next, or which morning will result in yet another hospital stay.

But it takes courage to remember Erin is inside…still pressing on that stretched skin. I continue to push. I continue to get out of bed. I continue to raise my arms, no matter how uncomfortable, to wash my own hair and brush my own teeth. I continue to space my medication so I can get back to driving, even if only to and from school. We are tapering off this steroid. My body will return, slowly, to its normal size. And eventually, as I continue to press, I will break through.

This is what it is like to live with Lupus.

May is Lupus awareness month. You can learn more about Lupus at the Lupus Foundation of America


  1. As you said, remember Erin, she is all that matters and all that anyone cares about. I’m wishing you break back through soon.

  2. For what little it’s worth, I think of you and your family every day. And I appreciate what you are doing amid this struggle to shed light on lupus for yourself and all others (like my own mother) who live with it every day.

    Much love.

  3. Melissa (DrSnit) says:

    What a profoundly moving piece. I’m so sorry you’re dealing with so much. Being chronically ill is so hard – and doing it with kids, family, trying to work and write, dealing with guilt and pain and passion and love – such a giant mix on top of everything else. And you express what it is like to physically deal with it. Most people have NO comprehension.

    I’m a coward. I talk about emotions. I talk about patient advocacy. I’ve long long long ago stopped talking about the pain. Thank you for putting voice to what it REALLY feels like to live with it. If I were braver I would write my way back to it – but most days I just haven’t the heart to let myself feel it, let alone share it with anyone else.

    sending you SO SO SO much love.

  4. You go, Erin. Speak out. Break through. Live. You can do it. We’re behind you.

  5. Carolyn Lawson Low says:

    You are brave and wonderful – and an inspiration. And I just know your breakthrough is close..,, strength and peace beaming your way.

  6. So strong. And on the other side, loving through the toll of Lupus, that beautiful family of yours, products of Erin.

  7. Oh Erin, I am so sad this is happening to you. I admire your courage so much.

  8. Fogspinner says:

    Thinking about you all the time. Don’t ever give up that will to break through. It takes an incredibly strong person to keep up the fight when it gets really hard. You are doing that and we are all here to support you through it!

  9. Taking it slowly and pacing yourself is so important. It’s frustrating, I know, doing everything right and following the directions and still needing hospital stays and more and more rest.

    But you are still Erin; you are not lupus. I’m grateful to hear that you remember that.

  10. I was too young to know what my mother was coping with…. but I can still see her steroid pumped up body…. her loss of hair…. her cheeks so inflamed she didn’t look like her.

    But she was my mommy. And all that I described above is only what I later saw in photographs. I only saw the mommy inside.

    I only see the Erin inside. And she’s the strongest woman I know.


  11. Erin, YOU are what it looks like to be a fighter and a sharer and an inspiration! I’ll be damned if I’m going to complain about a headache any time soon when I know it could obviously be way worse. I swear, I wish, and I’m not even kidding when I say I would be there to help you if I were closer, to ease some of the day-to-day challenges.
    Delicate hugs to you.

  12. I don’t have lupus, but I do have fibromyalgia. So many people would give up and use lupus and fibro as an excuse. But not us. Not you. You do what you need to do and still make time to do what else you can, too. You are a fighter. A rebel. A survivor. Thank you for bringing awareness of these invisible illnesses to others.

  13. Erin, What a very moving and very true article. As I was reading I could feel your pain and understand what your thoughts were all about. I have Lupus and MS as a secondary illness, plus all the side effects that come with the medications. It sounds like all of us that have these illness are very strong and are fighters to continue our lives as normal as possible. it is so important that we give each other support and consolation when we can. Thank you for sharing your thoughts. Wish you many pain free days. Hugs 🙂

  14. Thank you for sharing this, Erin. You are an inspiration to so many people, with your courage and humor. ((((Virtual hugs from Toronto))))

  15. Howard Greenstein says:

    We’re here cheering you on as you continue to push. Keep strong!

  16. Hi Erin, Sorry you (and your family) have to go through this…keep strong & carry on……

  17. For people new to you, they probably immediately think, ” oh, you poor thing!” and pity you. While I am sympathetic, I know better. You’ll kick the ass of lupus. It might be slow and painful, but you will. And you have so many people standing next to you, holding your swollen hands, not seeing your puffiness, but seeing the Erin inside. Seeing you live with lupus sucks, but I so admire how you do. 🙂

  18. gosh I just want to give you a hug. Or come do some chores for you (and I hate doing chores.) My aunt had lupus and she would never talk about the pain she was going through. Thanks for bringing it out in the open, but I wish you didn’t have to write any of this. xos.

  19. Erin, I’m so sorry that you have such enormous pain. I too have lupus and have the pain from it, the fibromyalgia and rheumetoid arthritis. It’s been something that is there but I don’t really talk about it. It makes me feel like a burden to others if I do. You are brave and I so appreciate your writing. Would love to chat more. Visit my site anytime. I write about health and wellness. Guess where I got that idea???? Best to you!

  20. “Perhaps some break through pain as I try a new fibromyalgia drug” ugh… and the side-effects on those are all just a skip through the park – if you mean Central Park at 2 a.m. alone, naked, and clutching wads of cash to your chest.

    I hate it whenever someone gets close to describing that all-over, unrelenting, exhausting pain with just words – because the words are such a pale reflection that I know how deeply that means the author is really hurting on that day.

    Hang in there Erin. I believe with all of my heart that there will be real understanding, new science, and cures soon. I really do. But you have to be there for it… it wouldn’t be the same without you.

  21. Love coming at you from Kansas City. I still see the real Erin. I have your head on a stick, remember?

  22. I’ve come back into the light of the online world after 21 months away, so there is a sharp line, memories of yesterday spliced to the state of the world of today, the 21 months spliced away. And from this place, this first reading of a post of yours since my return, it is obvious Erin is still there. Erin still writes, still has something to say, still has lots to contribute, still attracts a world of followers, still has us all waiting to hear what you have to say, and still is as feisty as ever. How can someone be gone for almost two years and remember hashmarksuckit? Yup, feistiness is a good quality to have… give me some attitude!

  23. Heather says:

    Thank you for reminding me I am not the only one that has those feelings. I wish pain on no one. But it is nice to remember that others understand what Lupus feels like.

  24. You never cease to amaze me! Your courage, your strength, and your ability to move ahead no matter what is thrown in your path! If anything you will kick lupus in the butt and send it to timbuktu! I’m sending you hugs, my kung-fu moves, and warm wishes 🙂

  25. Erin – sending virtual gentle hugs across the miles. in sickness, as in health, you have the talents to touch our hearts.

  26. Erin, I am so sorry. You should be proud of yourself, though, because you are getting on with it. These crap diseases make you want to curl up in a ball until you wither away. But you don’t. You are still a Mom, a writer, an advocate, a YOU. Brava. 🙂

    My crap disease is MS. Five years ago I was a health care executive making six figures. Then came my diagnosis. Today I am unemployed, out of money and about to lose my home. I also am in pain all the time and can barely walk anymore. Medications and immobility have caused me to gain so much weight I am virtually unrecognizable to myself. But, against all reason, I just keep getting on with it too. I write about the Monster, try to raise awareness and research funds, try to maintain some standard of living even when I am facing so much uncertainty. I want to curl up, but can’t just yet, I have to keep fighting.

    Thanks for a great post of bravery and perseverance.

  27. I am 49, was diagnosed with SLE July 2010.All the pain I have suffered for the majority of my life, finally has a name. I read your blog, and I cry. I don’t feel so alone. I am confused that I thought that pain was normal. My muscles, my joints, my wrists,knees and hips. All something that I have to wake up to, and go to sleep with. I raised 2 husbands and 3 sons. I have worked for 32 years, hard labor work. I power through everything. But I can’t anymore. Doctor says I have a high tolerance for pain, I thought my thight muscles were always supposed to feel bruised all the time, to the touch. I just powered through my life. Now I know. Now Im scared, and now I educate myself daily.I have yet to see a rheumatologist, due to not having insurance. I have no treatment,and am sure I am facing knee surgery and hip surgery, but still I power through it. Thank you for blogging, as painful as it is to read, it makes me see I am not alone.

  28. Thank you for this post. I’m not sure why this is comforting to me except to know what I have to (not) look forward to. to know that others are dealing and living with with the same side effects, hating it, and getting through it somehow anyway.

    I’m still reeling from my diagnosis of autoimmune hepatitis and cirrhosis, and terrified of the l regimen I’ve been prescribed. There’s so little information out there about the real effects of prednisone– emotional, psychological– especially for those of us who have to be on it long-term. Every blog post helps.

  29. Best grab a gun and shoot myself now if this is what’s to come!


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