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Managing Lupus and Work -- Is Disability an Option...

To work, or not to work: that is the question. Lupus is a disease of flares...

- Christine Miserandino

Posted by Christine Miserandino

To work, or not to work: that is the question.

Lupus is a disease of flares and remissions, which makes it very difficult to get and keep a job. Problems and issues related to managing work are a familiar story I often hear from other lupus patients.

Along with others, I have struggled with the circumstances of working and having lupus. It often seems like a never-ending cycle. We need to work to make money and to survive. We work for our careers, our passions, and even our identities.

But then at some point, our lupus symptoms seem to get in the way. Exhaustion stops us from getting to work on time or staying a full day. Memory loss or pain can interfere with effectively doing our jobs. If lupus affects our organs, then work is sometimes completely impossible.

For many people living with lupus, working and living a "normal" life is a possibility. For those who have problems with a regular work environment, or can't work, deciding the next steps to take can be overwhelming. Can your employer make reasonable accommodations to help you stay at your job? Can you telecommute, work part-time, or take on different responsibilities? Is it time to apply for disability benefits?

All of these questions can only be answered on an individual basis. There is no single set of answers that can apply to every person and the specific lupus challenges they face, their finances, or work situation.

We can help each other by talking about actions we have taken in similar situations. We can share what it's like to be on disability, or what changes we make to be able to continue working. Let's share our experiences, advice and support on the difficult work or disability choices so many of us living with lupus must often make.

How has lupus affected your ability to get hired or maintain a job? Do you have suggestions for others who face the challenges of a career or the prospect of applying for disability benefits? Tell others in the lupus community your strategies to cope with work-related issues.View Thread

- Christine Miserandino

Posted byChristine Miserandino

6 Replies | Reply | Watch This DiscussionReport This| Share this:Managing Lupus and Work -- Is Disability an Option? To work, or not to work: that is the question. Lupus is a disease of flares...

Sad or Depressed? Do You Know the Difference?

Don't get me wrong, I know that getting a lupus diagnosis, having lupus, and...

- Christine Miserandino

Posted by Christine Miserandino

Don't get me wrong, I know that getting a lupus diagnosis, having lupus, and dealing with chronic disease is not easy. It can be very sad to learn that you have a new medical condition and must make a major change in your lifestyle.

If you find yourself feeling sad for weeks at a time, or if you have an overwhelming sense of hopelessness, you might be suffering from depression. Try to notice if there are major changes in your eating habits and sleeping patterns. You know yourself best. If you are crying more often, if you are missing events you usually attend, or if you are isolating yourself from social activities, family, and friends, you may be displaying signs of depression.

I am not a doctor. These changes are just some of the signs of depression. In addition to the few changes I just listed, there are many more signs to indicate that you might have depression. I feel I can write about this topic because as someone living with lupus, I have personally dealt with depression at numerous times during my life.

Many people deal with depression at different times during their life, and depression can be the result of a variety of reasons and circumstances. People living with lupus are more likely to deal with depression because of the disease itself, or as a side effect of the medications they take.

If you are feeling depressed, it's very important to be open and honest with your lupus doctor. Tell your doctor how you feel. He may be able to help by changing your medication regimen or recommending talk therapy. You can participate in any of the many support groups around the country and online for people living with lupus. You are not alone. Working with your doctor, building a good support system, and being aware of your lifestyle can help you in the fight against depression.

Depression tends to be one of those "hush-hush" topics that many people don't openly discuss, but not talking about depression only makes it worse.

How do you deal with depression? If you are comfortable telling others, please share your story or tips for coping. Let others who visit this community know that they are not alone.View Thread

- Christine Miserandino

Posted byChristine Miserandino

0 Replies | Reply | Watch This DiscussionReport This| Share this:Sad or Depressed? Do You Know the Difference? Don't get me wrong, I know that getting a lupus diagnosis, having lupus, and...

To Tell, or Not to Tell -- Dating with Lupus

Normally, when preparing for a hot date you are worrying about what to wear,...

- Christine Miserandino

Posted by Christine Miserandino

6 Replies | Reply | Watch This DiscussionReport This| Share this:To Tell, or Not to Tell -- Dating with Lupus Normally, when preparing for a hot date you are worrying about what to wear,...

Reply: How Do You Describe Your Pain?

Hi Everyone, I find that when I use numbers to describe my pain level it is...

- Christine Miserandino

Posted by Christine Miserandino

23 Replies | Reply | Watch This DiscussionReport This| Share this:How Do You Describe Your Pain? Hi Everyone, I find that when I use numbers to describe my pain level it is...

Reply: Sleep: What’s That?

I can identify with you LupyLisa.. because although I have trouble falling...

- Christine Miserandino

Posted by Christine Miserandino

6 Replies | Reply | Watch This DiscussionReport This| Share this:Sleep: What’s That? I can identify with you LupyLisa.. because although I have trouble falling...

Reply: Goodbye & Welcome To Your New Mod!

Welcome Elizabeth!

- Christine Miserandino

Posted by Christine Miserandino

7 Replies | Reply | Watch This DiscussionReport This| Share this:Goodbye & Welcome To Your New Mod! Welcome Elizabeth!

Reply: WOW! - Check this out - WebMD Lupus TV!

I am so excited about these videos! Everyone worked so hard on them and I am...

- Christine Miserandino

Posted by Christine Miserandino

7 Replies | Reply | Watch This DiscussionReport This| Share this:WOW! - Check this out - WebMD Lupus TV! I am so excited about these videos! Everyone worked so hard on them and I am...

Me, My Family, Friends, and Lupus

I am typing this from my mother's house. It is not at all unusual for me to...

- Christine Miserandino

Posted by Christine Miserandino

I am typing this from my mother's house. It is not at all unusual for me to be here when I am not feeling well. I am 33 years old, and yet, when my lupus flare comes, I head home. Sometimes I feel bad about going home to my parents. At a time when my parents should be retiring, they are still worrying about me and taking care of me.

I try to be very independent. I try to not bother anyone with my illness or ask for help. But the truth is, as I slept this morning, my father did a load of my laundry. My mother is so experienced at managing my insurance claims, that she could be a professional in that field.

With the best of intentions, I tend to "put up a front" and not tell the world when I am not feeling well. My family wants to know how I am. They want to help me, but they can't help me if they do not know what is going on with me. I recently learned that instead of avoiding a ringing phone, I need to answer it. Not answering the phone and not being completely honest when my family asks how I am feeling can make matters worse.

Sometimes having brain fog is embarrassing. Those of us who have lupus don't want to talk about it. But when I become forgetful and miss an important date, it starts a vicious cycle -- the people who care about me worry that something bad has happened to me. I have learned that being straightforward to the point of spelling out how people can help me also improves the quality of my relationships.

Not everyone is super supportive of a person who has lupus. I have lost friends due to my lupus -- because I would cancel plans, or couldn't go out for a drink or be in the sun, etc. Having lupus isn't fun! I have family members whom I am sure doubt the seriousness of my illness, and have their own opinions of how I should live my life.

I try my best to keep those people who are members of my inner circle close to me. They are the ones who really love me and care about me. I try to be honest with them about my health. For the other people in my life who may not be the most positive, I am sure you can all relate with my typical answer when they ask how I am feeling. I just say, "Doin' fine."

How do you deal with family or friends who are supportive of you -- or those people who are not supportive? Do you maintain an inner circle of people you know you can rely on for their love and support? Share your experiences with the community.View Thread

- Christine Miserandino

Posted byChristine Miserandino

17 Replies | Reply | Watch This DiscussionReport This| Share this:Me, My Family, Friends, and Lupus I am typing this from my mother's house. It is not at all unusual for me to...

Sleep: What's That?

Lupus patients, like so many chronically ill patients, have a hard time...

- Christine Miserandino

Posted by Christine Miserandino

6 Replies | Reply | Watch This DiscussionReport This| Share this:Sleep: What's That? Lupus patients, like so many chronically ill patients, have a hard time...

How Do You Describe Your Pain?

I hear it all the time from doctors and nurses: "Tell me your pain on a scale...

- Christine Miserandino

Posted by Christine Miserandino

23 Replies | Reply | Watch This DiscussionReport This| Share this:How Do You Describe Your Pain? I hear it all the time from doctors and nurses: "Tell me your pain on a scale...

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