13 People With Lupus Explain What It Feels Like

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Lupus is a chronic autoimmune disease that affects 1.5 million Americans alone. Symptoms generally include fatigue, skin rashes, swollen and painful joints, unusual hair loss and a high fever. Nine out of 10 adults with lupus are women aged 15-44, and it’s more prevalent among African American and Latina women. Symptoms can strike at any time, and because of the inconsistencies, the disease is difficult to diagnose — and even harder to understand if you don’t have it.

The Mighty teamed up with the S.L.E. Lupus Foundation to ask their community how they would explain life with the disease to someone who is unfamiliar with it. Here’s what they had to say:

1. “It’s like having the flu without having the flu. I feel sick, exhausted, weak and in pain for 24 hours or weeks. Then it goes away and will hit again whenever it feels like it. It takes so much energy to keep going from day to day. There is a lot of praying, crying and anger due to this disease. I appreciate when I have my good days, and fight through the bad ones because I refuse to give in or give up.” —Neeco Massengale

Young woman holding a thermometer in her mouth

2. “It feels like some vague but powerful evil is coursing through my lymphatic and circulatory systems, because it is.” —Trey Turnbull

3. “I feel like a 90-year-old in a 27-year-old body.” —Alyssa Jones

Old woman looking in mirror at younger self

4. “It feels like you ingested a toxic poison…and the sick feeling doesn’t go away…ever!” —Dawn Gursin

5. “Two words: It sucks!” —Sharon Antonellis

6. “Imagine your worst hangover. Then imagine waking up that way every day, sans party the night before.” — Carie Behounek Sherman

Woman with hangover in bed

7. “An exhaustive fight every day.” —Angela Payne Dawson

8. “My immune system attacks itself.” —JoAnna Johnson

9. “It will test every bit of your patience, your mind, body, soul and faith along with the people close to you.” —Danielle Schiren

10. “It’s a bully!” —Mary Copeland

Depression

11. “Do you have any allergies?… Well, imagine that nasty inflammation happening in your kidneys, your lungs, your joints, blood vessels… because you’re now allergic to yourself!” — Candis Stewart

12. “It’s like living with a ticking time bomb; you never know where it will strike next.” — Linda Brown

13. “I just ask them to Google the Spoon Theory. This has helped many of my family and friends to go halfway to understanding.” — Lesley Watkins

Metal spoon on table

If you have lupus, how would you describe it to others? Let us know in the comments below.

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My 8 Life Hacks for Living Serenely With Chronic Illness

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I have lived with lupus since 2001. Lupus is an autoimmune disease for which there is no cure.  It can cause serious pain in joints and muscles along with a host of other symptoms like brain fog, vision problems and extreme fatigue.

After many years of extreme lows living with this chronic illness and pain, I turned things around in 2013 and decided I wanted to live a life as fulfilling and serene as possible, despite living with chronic pain and illness. Surely this is possible, right? Right! I’ve developed a few “hacks” that have helped me immensely on my journey. Maybe some of them can help you, too!

1. Use positive self-talk.

I started thinking about how great it would be to have a Jillian Michaels-like life coach to push me to do the things I need to get accomplished. “Go, Lauren, go!” she would say. Sound silly? Could be. To this day, every day when I get out of the shower, I say out loud, “Good girl!” It makes me feel good to give myself some appreciation for something that oftentimes is very difficult to do.

2. Make your bed.

Why? Because if I make my bed, subconsciously I’m saying to myself I’m done with the bed for the day. I’m not going to camp out there like in the old days. Mind you, if I am having a particularly bad day, I can always get back in bed if I need to, but I’m making it a little more difficult for myself, and I have to really think it through if it’s made up already. Besides, there’s always the couch!

3. Attend an illness support group.

I used to think chronic illness support groups would be depressing. But when I started attending a local 12-step fellowship of Chronic Pain Anonymous (CPA), I found that we focus on the solution and not the problem, and my fellow members have turned into dear friends. If you can’t leave your home, there are many Facebook groups offering support for chronic pain and illness, and some groups (like CPA) have phone meetings you can attend from the comfort of your home. I no longer feel so alone in this struggle.

4. Do service.

In my life pre-illness, volunteering was my wheelhouse. I loved doing service at the kids’ school any chance I got. But once I got sick, I knew I couldn’t physically participate in a lot of the things I used to. Eventually I realized that by helping another who is struggling, my own struggles are lessened. Some days I can drive a friend someplace. On more challenging days, maybe I can offer helpful advice to a fellow chronic pain warrior in one of my Facebook groups.  Or write an article for The Mighty! I did this from the comfort of my home because the pain was bad, and it made me feel good to try to help others like you.

5. Keep it simple.

I try to keep things as simple as possible so I don’t overexert myself and use up more “spoons” than I need to. Amazon Prime is a godsend and I get everything from them, from rice to socks to supplements. The last thing I need on many days is to go to the mall or store to buy something I can have in a day or two with Amazon. Texting instead of speaking on the phone is also a great way to reserve a “spoon” or two and keep it simple.

6. Be grateful.

When you are sick with chronic illness, it’s easy to get lost in the bad things every day. I hurt, d*mn it! Being grateful helps me focus on the positive aspects of my life, and there are a lot if I just keep my eyes open for them. I have a group of friends I text with every day about one thing we are grateful for. Not every day is good, but there’s something good in every day.

7. Get dressed down to your shoes and be sparkly.

You will be more productive when you are dressed up because you feel more confident. Needless to say, I don’t get dressed up on a daily basis, but I do get dressed, often right down to wearing shoes. If I’m feeling lousy, any extra boost of confidence is helpful to get me through my day. I also spray myself with sparkly body spray. My thinking here? If I look sparkly on the outside, I will feel sparkly on the inside!

8. I no longer say I’m “suffering.”  

I used to say I “suffered” from chronic pain and illness. But suffering is a state of mind I no longer want anything to do with. I believe the opposite of suffering is pleasure or happiness. That I want! Now, mind you, there are many times when I just don’t feel all that full of happiness, but I still won’t allow myself to use that “s” word.  I now say that I “live” with chronic illness (or will occasionally allow that other “s” word, “struggle”).

You don’t have to suffer anymore, either.  Be well, pain warriors!

man, woman, teenage boy and teenage girl on the beach
Lauren and her family.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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My Strategy for When the Pain Is Unbearable

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My eyes fluttered open. It had been a long night in the intensive care unit after my heart surgery, but now the color beyond the windows was the saturated blue of dawn. My eyes drifted towards the clock on the wall — 7 a.m., it said.

“Oh my,” I thought. “How am I going to deal with the pain? It will get better with time, but how do I even get to 7 p.m.?”

On a regular day of lupus, especially during periods of high disease activity, I often collapse in despair because I don’t know how I can possibly deal with one more day of pain. And that is OK — it is OK to break down because I am exhausted, in pain and hopeless.

What I have learned is that it is pointless to reason with yourself when you are filled with pain. You have to simply get through it. You may not understand why or what for in such a moment, but you will when you get a good day.

That good day might not be now, and it might not come for awhile, but I believe what you have to do is just get through the day without overanalyzing it, and treat yourself with kindness. Give yourself a break — your body isn’t what it was yesterday, and isn’t what it will be tomorrow.

What I have found useful, especially when the pain is so unbearable that even a day is too long, is to break it down further into seconds.

That breaks the problem down into bite-sized, digestible pieces. I don’t have to fight for a “long period of time.” All I have to do is to choose to continue fighting in this very moment, this very second, now — and I know I can do it, and so can you.

Editor’s note: This is based on one person’s experiences and should not be taken as medical advice. Consult a doctor or medical professional for any questions or concerns you have.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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When I Shared My 6 Fears About Lupus With My Husband

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Recently I wrote a post about my fearswhich included dying, hospitals/ERs, lingering suffering, medicines, being alone and depression. Afterwards I shared these six fears with my husband. When he asked me why I was afraid of depression, I found I couldn’t manage to summarize or read aloud what I had written. It simply was too difficult and real for me to articulate. I told him he should just read it himself in order to understand.

What happened after he finished reading was entirely unexpected.

After giving me a big hug of comfort and understanding, he surprised me with a revelation. He told me, “I understand because those are my fears, too.” I was floored.

“You fear the same things?” I asked in astonishment. I knew I wasn’t the only one with fears, but for him to tell me he feared the same things was extremely enlightening. Of course, how he experiences those fears are different from the way I do, but they were still the same things.

He was afraid of my first three fears for essentially all the same reasons. My dying, hospitals and me dealing with lingering suffering all impacted his gut-deep anxiety of seeing me hurt. He isn’t an overly emotional man, but it was clear to me that this affected him strongly. I know the lengths he would go to in order to prevent me from having to go through any of that, even if it meant he had to bear it himself.

That these things crossed his mind when he entered a hospital or ERs really touched me. I have done my best to keep my uneasiness to myself, as clearly he has, too. We visit folks in the local hospitals reasonably often, so this isn’t a rare thing for us to be there. It definitely made me feel much less alone to realize he shared my trepidation when we go to a hospital.

His fears concerning my medications are pretty much right in line with my own feelings about them. He’s also glad they help me, but he’s also afraid of side effects, of them not working and afraid of the unknown when something new is introduced. Even if he isn’t the one experiencing these things first-hand, he does have to deal with helping me through them. He’s always right there, walking beside me as I struggle with whatever is going on. He knows. He feels it, too. I can’t tell you how much that helps.

He’s always been worried about the possibility of having to leave me alone in the world, even before my health declined. He’s just that sort of loving, caring man. But the thought of me struggling by myself with my lupus is almost more than he can bear. We both pray dearly that nothing will take either of us away from this world because neither option is at all bearable to think about. We need each other. It feels good to be valued that way, lupus and all.

Last of all is depression. I feel for him in this fear because as hard as it must be to spiral into that darkness, it must be so much harder to watch one you love so dearly fall into unreachable darkness. His fear here is painful to see because the anticipated agony is so visible to me. His worry is that I will slip beyond his ability to call me back, and that I will succumb to the fears and despair lupus can weigh on a person. He’s afraid of watching me move beyond the influence of his love. We always work on problems together, and it would be wrenching to have something like depression remove that. That is the crux of his fear concerning my becoming severely depressed.

As odd as it sounds, it comforted me greatly to hear him confess to these fears. I’ve told him in the past he shouldn’t hide his worries from me, and that knowing his fears helps me to feel not so alone, as opposed to taxing my emotional strength. This was a prime example of how true that is. His opening up to me about his feelings and fears helped me to lean on him and let him lean on me in return. Together we’ll muddle through. Together we are stronger than trying to wrestle with these things alone. I am so grateful and blessed to have him as my husband, my soulmate and my biggest source of support, comfort and love.

To all the caregivers out there, most especially the spouses, a deep and heartfelt thank you.

man and woman touching foreheads

Follow this journey on Lupus Rhythms.

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13 Things People Who Have Lupus Wish Others Understood

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Lupus is a chronic autoimmune disease where the immune system attacks the tissues because it cannot tell the difference between sick cells and healthy ones. The condition can affect any part of the body, including the skin and major organs, and can cause inflammation, pain and damage.

Because lupus is an invisible illness, a lot of misunderstanding and misconceptions surround it. So The Mighty teamed up with Lupus LA to ask our readers what they wish others understand about this disease.

Here’s what they had to say:

1. I am not faking, and I am not trying to ‘get better.’ There is no ‘getting better,’ there is only ‘getting by.’” — Jennifer Elliott

A quote from Jennifer Elliott that says, "I am not faking."

2. “I wish [people] understood the sudden feeling of overwhelming sickness that overcomes me without warning when I have to go home early or cancel… Friends get mad or they don’t even want to be my friend any more and it hurts.” — Liv Colantro

3. “This autoimmune disease changes your life and you as a person.” — Annette White-Haas

A quote from Annette White-Haas that says, "This autoimmune disease changes your life and you as a person."

4. “One of the symptoms of having lupus is a lack of emotional, mental and physical energy. That precious energy needs to be distributed thoughtfully in all aspects of life.” — Ritzie-Fierce Apellido

5. “When you have to cancel plans last minute, it’s because you really are not feeling well. The reality of living with lupus means plans can’t ever be set in stone.” — Denise Gallardo

6. I will always be sick. I may have better days and worse days, but I will be sick and in pain from lupus every day.” — Tristen Wuori

A quote by Tristen Wuori that says, "I will always be sick."

7. “Lupus affects young people too. I always get ‘you’re too young to be sick like that.’” — April Hernandez

8. “I trust that you care about my well-being, [but] please trust that I keep myself as informed as possible and make the best decisions I can for my own health. It is, after all, my life on the line.” — Julie Pruitt

A quote from Julie Pruitt that says, "I trust that you care about my well-being, [but] please trust that I keep myself as informed as possible and make the best decisions I can for my own health."

9. “We can’t always be strong and keep up with life every day. Sometimes we just need a break and [to] lie in bed.” —Tricia Badowski

10. “I am fighting the good fight the best that I can.” — Danna Cook Lamphere

A quote by Danna Cook Lamphere that says, "I am fighting the good fight the best that I can."

11. “Although you may not see it on the outside, my insides are falling apart.” — Bridget Cooney

12. “I rarely ask for help but that doesn’t mean I don’t need it.”Rebecca Albertson-Zeigler

13. “Lupus affects all of us in different ways and some days are a challenge, but we aren’t giving up”–Shantell Brown

A quote from Shantell Brown that says, "Some days are a challenge, but we aren't giving up."

*Answers have been edited and shortened.

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When a Doctor Asked Me Why a ‘Young Girl’ Like Me Has 'So Many Problems'

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Last week I ended up at the hospital because I had muscle weakness so severe I could barely swallow solid food or rise from a seated position. As someone with lupus, I suspected this to be a symptom of my connective tissue disorder. I was seen by four doctors. Three of them seemed very concerned, empathetic and determined to find a cause. And then, after eight hours of tests, one last doctor walked into my hospital room, took one look at me and greeted me with the words, “What’s a young girl like you doing with so many problems?”

I kept my cool by ignoring his comment because my health was literally in his hands, but I was so deflated by his reaction to my illness that I just wanted to hang my head and cry.

It took me almost eight years to be diagnosed with lupus because of similar comments by other medical professionals. It’s because of this “young means healthy” mentality that I avoid seeking medical attention for the majority of my symptoms in fear of being judged simply for being sick.

I don’t think it should be up to a 26-year-old patient with lupus to remind a doctor that not just older people get sick. I shouldn’t have to point out we wouldn’t have pediatric hospitals or juvenile diseases if the young were spared illnesses just because of their age.

I shouldn’t be looked at like it’s all in my head because someone in their 20s should never be ill.

But that can be the reality for teens and young adults with invisible illnesses. The medical community who should be helping us can at times make things more challenging for us. We put so much trust in our doctors to keep us healthy that it can be extremely intimidating to question their authority. But when a doctor comments on our age in such a negative way, we owe it to ourselves and to other members of the young chronic illness community to second guess them.

So next time a doctor asks why such a young girl has so many problems, I won’t keep quiet. I will raise my voice and confidently remind the doctor that 9 out of 10 adults with lupus are women between the ages 15 to 45, according to WomensHealth.gov.

If disease rarely discriminates based on age, doctors shouldn’t either.

Lisa Walters the mighty.1-001

Follow this journey on Damsel in a Dress.

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