About Lupus

Jessica’s Coping with Lupus Corner

"How can I explain lupus fatigue to my family and friends?"

Jessica Rowshandel, M.S.W.
Jessica, Rowshandel, M.S.W.
Director of Social Services
S.L.E. Lupus Foundation

Dear Jessica,

I need help explaining what lupus fatigue feels like to my family and friends. Sometimes they think I’m just being lazy. Do you have any suggestions?

Jill
NYC


Dear Jill,

So many of our patients have fatigue, and like you, they say that since they don’t usually look sick, it’s hard for friends and family members to really “get” just how wiped out they are.

To make matters worse, lupus fatigue is not only unpredictable but can be maddeningly hard to describe. Some people think of fatigue as simple tiredness, when that’s not it at all, as you know. How many times have you heard, “Just push yourself a little harder?”

When I ask our patients to explain what lupus fatigue feels like, they make comparisons. “Fatigue feels like a heavy stack of metal sheets sitting on my chest –-hundreds of pounds worth,” said a young woman at a recent support group. For her, fatigue is an extremely heavy force that she cannot move, no matter how hard she tries.

Others say that the fatigue of lupus feels like they have been drained of all energy…as if something vital is suddenly missing. All the light bulbs inside have burned out at once. A bundle of balloons has popped, and suddenly fallen to the ground. “I feel limp like a rag doll or a puppet whose strings have been cut,” one support group participant said.

There is one way of describing lupus fatigue that I often share because it’s so visually clear and concrete. It’s called the Spoon Theory, and it explains how a person with lupus fatigue must be choosy about what he or she does since on some days, there are very few rations of energy (spoons) to go around. Read the theory here. You might want to consider trying it the next time you are telling a friend how you feel.

Regardless of how you may describe your fatigue, one thing remains constant: it’s not about lack of effort. “No matter how hard I try, I just cannot get out of bed, and I really want to,” is something I often hear. It’s an important thing to note. You are definitely not being lazy.

Do you have ways of describing fatigue, or “comparisons,” that you think others might like to hear about? Tell us about them in the comments section below.


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Disclaimer: This website and its contents are designed for educational purposes only. Jessica Rowshandel, MSW is the S.L.E. Lupus Foundation’s Director of Social Services. She is not a physician. The advice provided is for educational and informational purposes and the Foundation does not recommend or endorse any particular treatment or therapy. The information provided here should not be used for the purposes of diagnosing or treating a medical or psychiatric illness. It is not intended to be a substitute for professional care. Lupus is a very individualized illness; consult a healthcare professional before making any decisions about your care. If you have or suspect you may have a health problem, you should consult your health care provider. Telephone calls, emails, and online content do not constitute counseling services in any way. The S.L.E. Lupus Foundation does not provide any medical or psychological services to its patients and users. For an accurate medical or mental health evaluation, participants should seek an evaluation from a qualified healthcare professional. S.L.E. Lupus Foundation employees, consultants, and agents shall not be liable for any claims or damages, and expressly disclaim all liability of any nature for any action or non-action taken as a result of the information generated by the S.L.E. Lupus Foundation programs and its website, as well as the S.L.E. Lupus Foundation Facebook and Twitter pages.

Comments

lupus fatigue

Hi all fellow sufferers. It is very uplifting to know I'm not alone in this horrible disease. I too have a hard time explaining the fatigue to friends,even family. I found a wonderful letter written by a lady named Christine Miserandino called The Spoon Theory on the site "But you don't look sick". Look it up,I think it will shed some light for others. I have e-mailed it to everyone I know and may even put it on my facebook page. Hope it helps some of ya'll.

My ANA count when I was first

My ANA count when I was first diagnosed was 3000. I tell people it's like trying to run in quicksand.

I wish!!

I wish my mom wasn't sick.

Thank you Cynthia C

I was so happy to find this site and see your comment You are the first person I have found with atleast two of my diseases Lupus and Antiphoslipid antibody syndrome. I was diagnosed in 1998 with the SLE and APS when I got pregnant and had a miscarriage at 3 months they ran alot of test and found both. I had another miscarriage 6 months later I was only 6 weeks but it still crushed us. I had two DVT in my leg first one was a month after my second child was born 2002 they put me on lovenox shots until I got to the 2.0 to 3.0 I only had to take coumadin 12.5 mg to 15 mg at that point for a year. I have since been diagnosed with Idiopathic Thrombocytopenic Purpura this kills your platelets the lowest mine has been is 5,000 its not fun they keep me on Prednisone 80mg and Dexamethasone 20mg I have gained 129 pounds since 2009 I stay so depressed but try not to because as you no stress and depression can cause flares. My doctors has also diagnosed me with Raynauds Syndrome, Fibromyalgia, Bad Migraines and Brain Fog. I had another blood clot this year 2012 im back on Coumadin 17.5 and 12.5 I have to rotate Im really sad this time my DR. said its life long this time .My life is full of pain and fatigue I hurt all over I get some pain relief with pain meds that the only relief I ever get. If I use a body part to much I feel it two to three days later and it hurts so bad like I broke it. I cant be in the sun at all and the heat to much I will start vomiting, pass out and get a Migraine. I cant be in the cold to much or my Raynaud hurts so bad I hate it all. I have learn over the years if I have some big event to go to or just wanna be able to do something with my kids I take three day of doing nothing but rest and that helps but be ready to take 3 days of rest after. I have bad memory loss also I hope some of this has helped I feel like a lots has been lifted off me just typing this to you because I never do talk about this to anyone sorry it was you I picked lol Thanks my lupus friend I hope you have time to get back to me.

 @Cynthia - It sounds like

 @Cynthia - It sounds like you have been having a hard time. It is true that there is an unpredictability with lupus, but it sounds like you are starting to identify certain triggers, which is helpful. It also seems that you are being proactive about reaching out for support and learning how to cope. Learning how to cope with the ups and downs with lupus is important because it makes the downs more bearable. Perhaps you could repost this on our Facebook page to get a conversation going with others: https://www.facebook.com/lupusny

When I ask my support group members how they cope, in a general way, they say that they write in a journal, find support (from group members if family/friends are not available), try to laugh as much as possible, try to do as many things in their lives that bring them joy. Practical ways: keeping all doctors appointments and taking medication as prescribed, keeping a symptoms journal to see if any patterns (triggers) can be identified, eating well, getting enough rest, listening to their bodies. This is simply a small list of suggestions, I am sure others can add to this list. This is a good topic for an upcoming column. Check back later in the summer. :)

Warmly,

Jessica

 @Imerda Santriana - I'm

 @Imerda Santriana - I'm sorry to hear this, although it is unfortunately a common experience. Are there in-person or online support groups you can attend to find support from people who understand?

 Great comparison! Thank you

 Great comparisons Kicki and Carrie! Thank you for sharing.

my s.l.e. lupus

I have been diagnosed with sle lupus and antiphospholids, I have been treated for ra for about 5 years and a recent move to oklahoma and a new rhuematologist has now found this. I feel so disabled, I feel so broken. I am tired, hurt all over and get bad headaches. The steroids make my blood pressure high, and then they give me more meds for that, and more meds for supressing my immune system. It is such a vicious cycle. My daughter and husband are directly effected as I am completely different. With no energy I am trying to learn to cope. I recently realized the sun makes me alot worse. Does anyone have any suggestions on how to feel any better or is this the way it is for the rest of my life.

Fatigue

I use to compare it with the battery in my phone. I am blinking red. I need more power...There is no energy left and therefore i'm not working as i should.

Lupus Fatigue Comparison

It feels like I have cement flowing through my veins! I can feel the fatigue all the way down to my fingertips!

I have lupus too.I am in a

I have lupus too. I am in a great fatigue most of the time. I feel extremely tired! I'm sad that people around me don't understand how I feel..some of them think that I'm lazy..and that makes me feel so sad :(

Hi, I, too, am a T1 diabetic

Hi, I, too, am a T1 diabetic & just was told I have Lupus. It makes so much sense, but for yrs I have chalked up the fatigue to diabetes. The tired-ness is awful right now, on top of keeping track of my blood sugars. I had to even quit a job afew mos ago; I want to find out about disablility when I see the Rheumy. I am in the dark, too, as to what can help the fatigue:(

lupus

The worst part about lupus is the fatigue. I can't understand it myself so consequently it is hard to describe it to anyone else. My family thinks if I get up and do things that I would feel better. I wish that I could. I wish that they would just read a little bit more about lupus so they could understand what I am going through. It is a disease that fights your body everyday of your life. It causes pain so bad sometimes that you don't know how to get past it. I wish I didn't have to feel so alone in this journey. I pray for all of you who share this disease and hope for a cure to this nightmare we live in. God Bless

Understood!

My family doesn't really get the fatigue at all. They understand my diagnosis but don't understand how it affects my ability to keep up at the same pace. During a recent move they question why I was spending money to hire New Jersey movers . The bottom line is that there was no way I could have moved myself from my old apartment to my new apartment. I could barely function at work for 8 hours let alone come home and box up my stuff, load a moving van and unload everything. I appreciate the link to The Spoon Theory and my have to share that with my parents and siblings.

fatigue pain and people

I have been diagnosed with SLE for many years. I have learned how to deal with misunderstanding people.....education! I disclose all I have learned about our disease to those close to me, it helps them grasp my "bad days". It use to make me feel guilty or lazy when I couldnt do something, now I realize, we have to be twice as strong and tenatious to function with the rest of the world! My having SLE &Fibromyalgia doesnt define me, but people should be aware that looking Hot does not always mean we are feeling Hot! Prayers for you all, stay strong, I myself know how strong you all are.

Recently Diagnozed with Lupus

I have just recently diagnosed with Lupus. I also have diabetes. I am insulin independent for many years. I am waiting for some blood work results to come into my doctor. He is conducting a study in his office for Lupus. So all I know is that I have Lupus SLE. Any suggestions on what I should be doing or not doing. So far I have extreme fatigue. It is very hard sometimes to keep my eyes open. I have to work full time and then some to make ends meet. I am really at a lose as to what to do??

Explaining what my fatigue feels like

I always say it feels as if my bones are all made of lead. :(

lupus

can she find a good rheumatologist? I have had lupus for 13 years and would
come home from work and as soon as no one was looking crawl until i was able
to walk again. Unfortunately, part of the answer for me was steroids and other medications, along with being forced into early retirement. Sitting down
frequently in between household chores also helps. Life just slows down
so much!!!

Hi Shannon,   I'm sorry to

Hi Shannon,

I'm sorry to hear about your mom. Please feel free to call me ar 212-685-4118 or email me at jrowshandel@lupusny.org if you would like to speak further.

Warm wishes.

lupus

My mom has lupus and has had a confirmed diagnoisis for three years now. SHe is being treated and goes through monthly Ivg therapy however I do not know if it is helping. Her feet have gotten so bad she can hardly walk. They say the damage is irreversible so... now what what do we do next. This truly does suck