About Lupus

Jessica’s Coping with Lupus Corner

Does Lupus Cause Depression?

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

Instead of answering a question from one of you in my “Dear Jessica” column this time, I’d like to take a look together at the interesting results of a recently published research study—“Psychosocial Limitations of SLE: Implications for the Health Care Team”—that a lot of you took part in.

This study asked a vital question: how does lupus impact the lives of people on emotional levels, not just physical levels?

Without doing any research, I can hear you all shout a resounding, “Yes! Lupus does take a toll on me, emotionally.”

Proof to the world

Of course it doesn’t take a study to know the impact of lupus on each of your individual lives. But it does take a study to have proof to show the world that what you have been saying all these years is, indeed, based in fact.

Thankfully, these facts now are circulating within the healthcare world beyond lupus communities. Along with the FDA approval of BenlystaTM for lupus, this news adds up to quite a year already for growing awareness of lupus and recognition of just how hard it is to live with what’s often an “invisible” disease. .

What did the study show?

The exploratory study of nearly 380 people diagnosed with lupus (and receiving services from us here in New York City) revealed that there is no doubt that having lupus can be associated with feelings of depression and anxiety.

Most participants reported that the reason they felt depressed or anxious was

  • primarily because of changes in their physical appearance
  • secondarily because of the effect of lupus on the way they felt physically – especially in terms of joint and muscle pain. As you know, these experiences can put quite a damper on your self-esteem and quality of life.

(But note that this depression is different than the direct effect of lupus on the brain, which can also cause depression.)

When it came to physical appearance, changes such as hair loss and weight gain were the most distressing. Is this true for you as well?

And in terms of joint and muscle pain, participants weren’t as distressed by the pain itself as by the way the pain limited their ability to do the things they wanted to do. Can you relate?

Also adding to feelings of depression and anxiety with lupus:

  • having frequent flares
  • chronic and persistent symptoms
  • lack of health insurance and employment.

Taking Control

On the bright side, there was one major factor that lowered the chances of feeling depressed and anxious with lupus: the amount of control the person felt they had over their own life.  

So analyze yourself. Weed out any unhelpful patterns that help you feel out of control. How do you cope during your bad days? It’s O.K. to feel sad or angry, but do you give up completely—or do you later take note of the big and little things that are going right?

It’s About Balance.

What can you do or think about that brings you joy? What does define you?

I often tell people who come to see me here at the Foundation, be sure to eat as well as you can, exercise when and how you can. Get enough sleep! Be sure to keep your medical appointments and take your medication as prescribed. These are ways you can help your body, ways you can be in control.

And don’t be afraid to ask for help! This is especially important if you feel that you are feeling depressed and anxious over long periods of time. Read more about this here.

Finally, don’t give up. Don’t let lupus define who you are — no matter what.

Read more about the study here.


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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

in your head. . .

I also believed that some of what i was feeling was my own thoughts making me feel sooo bad. At one of my doctor appointments i actually said to my doctor before i was diagnosed, 'either i am having a nervous breakdown or i am dying.' my doctor said that the physicals signs on my body could not be 'in my head'. eventually, they diagnosed me with lupus and started treatment but sometimes i still wonder if my fear of the disease makes it worse sometimes.

Thank you all for commenting

Thank you all for commenting on this post.

@Anonymous #1 - Here is information for the lupus chapter in the Bay area - The Lupus Foundation of Northern California, http://lfnc.org/ , 408-954-8600

@Darnise - Thank you for sharing your story with us. I'm glad you find our site helpful. I can offer you further support if you would like to chat about these daily struggles. My phone number is 1-800-75- LUPUS (58787). You can also email me at jrowshandel@lupusny.org . In the meantime, here is an article that you might find helpful - http://www.lupusny.org/about-lupus/advice-column/how-can-i-get-help-i-fe...

@Anonymous #2 - Welcome to our online community!

Support group in Bay Area

My 12 yr old son was diagnosed with Lupus in 2010. I am looking for a support group for him to talk with other Lupus kids in the Bay Area.

Does Lupus Cause Depression Blog

I just wanted to say thank you for the insightful info about lupus and depression. I have struggled with both since 2004. I thought I had managed it but now recently May 2010 to the present my Lupus and Depression has crippled me to where I am unable to concentrate on my job tasks, memory fogs and severe joint pain where I can not stand or sit for more than 15 to 30 minutes. From someone who has been able to work substantially since I was 15 to now 39 years old not able able to work to take care of my child and every day necessities is very scary and suffer with severe depression and anxiety. I will continue to pray for everyone and so glad to come across this site.

Thank you for sharing this!

Thank you for sharing this! As a relatively new lupie, it really helps to know that others experience the same things and it's not just in my head...