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.
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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