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
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
Normally, when preparing for a hot date you are worrying about what to wear, or hoping to make a good impression. However, when I was dating, I had to worry if my pocketbook was big enough to hold my pill box! It might sound strange for me to be concerned about carrying a tote bag instead of a cute little purse. But hey, that image is funny -- we all need to have a sense of humor!
The truth is, on a first date, I worried about how I was going to take or hide my medication. I also worried about canceling plans at the last minute due to my health. Although I didn't want to lie, I also didn't want to blurt out that I had lupus when I was on a first date.
I feel that lupus does not define who I am. I didn't want my diagnosis to detract from my personality. I usually decided that along with politics, religion and other "no-no" topics, my medical situation would be off-limits for the first few dates. If, after a little while, we decided not to continue the relationship, there was no issue. I did not already share my personal health information with someone who was not going to stay in my life.
I could probably write a humorous novel about lupus dating horror stories! It's not always easy to explain that the faint smell of eucalyptus on your skin is not from a new perfume, but instead it's from the heat rub cream used for your muscle aches!
What is the dating world like for you? Don't be shy. Share your tips, funny stories, and the drama relating to dating and lupus with the community!View Thread
I find that when I use numbers to describe my pain level it is hard because something gets lost in "translation". I have learned that someone who is healthy and does not deal with pain on a pretty consistant basis might have a totally different concept of what a pain level 5 is. For them that might be pretty bad, but for me that might be average.
When not using "spoons" to describe my illness.... I have found using descriptive words, like throbbing, piercing, swollen joints etc. Or describing it by saying "I feel like I have the flu" this way they have something to relate to or imagine.
I am so excited about these videos! Everyone worked so hard on them and I am really proud of how they came out. I am hoping they will be a great resource. It was an honor to be apart of them!View Thread
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
Lupus patients, like so many chronically ill patients, have a hard time sleeping. I know I am not the only one who always seems to be chasing the perfect sleepy dream. I wish getting a good night of sleep involved just one simple issue that is easily fixed. Wouldn't that be great? So many factors can cause insomnia, even for the healthiest people. Those of us who live with lupus have even more reasons to lose sleep.
Stress and lifestyle choices are two of the most common reasons many people have insomnia. Lifestyle choices such as setting a consistent bedtime routine, caffeine intake, and nutrition, can all cause disrupted sleep, or trouble falling asleep.
People who have lupus have many other factors that hinder getting a good night of sleep. Side effects from medications like steroids, night sweats, or pain can block any attempts to get some rest. Just thinking about all these sleep issues could keep me up all night!
I don't claim to be an expert on the subject of restful sleep, but I do have some sleep tips that have worked for me:
If you take steroids or other medication that can interfere with your sleep, try taking your medication at a different time of day. Check with your doctor before you change the time you take your medication.
Keep a notebook by your bed. If you have a lot on your mind at the end of the day, clear your head by writing your thoughts down on paper.
If you take medicine that has the side effect of sleepiness, ask your doctor if it's ok to take the medicine at night. Use the side effect to your benefit.
Try using a white noise machine to signal your brain that it's time to rest and go to sleep.
What are your best sleep suggestions? What works and doesn't work for you? Share you strategies for better sleep with the community. In the meantime, sweet dreams!View Thread
I hear it all the time from doctors and nurses: "Tell me your pain on a scale from 1 to 10". I always cringe at the thought of summarizing my pain and fatigue down to a number. I also get scared at the thought that I have never felt below a 4 or 5.
We all know that pain and fatigue is different for everyone. Some people who have lupus use great adjectives to describe their pain, like a "piercing" pain in their shoulder, or an "achy" pain that feels like they're bruised all over. I've found that using descriptive words helps others understand my pain because I'm painting a better picture for them to relate to and understand.
We all have ways to communicate how lupus affects our lives. As an example, I once used a handful of spoons to describe to a friend what it was like to live with lupus and to be forced to make certain choices when it comes to performing the everyday activities that most people take for granted. People with lupus have to parcel out their daily activities and tasks because they often aren't able to do everything they want or need to do. To illustrate this, a spoon is removed from the bunch for every daily task completed to show the choices that must be made by a person with lupus. I still use my "spoon theory" with family and friends as they ask me how many spoons I have left, or even give me spoon gifts to brighten my day.
I know that as much as I try to communicate what I'm going through, it sometimes feels like only other people living with lupus really get it and understand. That's why message boards like this are so important.
What methods have you tried to explain what living with lupus is like? How do you describe your pain to others? Do you use the pain scale, descriptive words, or maybe that chart with all the expressive faces on it?View Thread