Living With Lupus

Living with Lupus is no easy task.

Lupus can bring depression, anxiety, fear, loss of self-worth, and an overall feeling of negativity and hopelessness.

When my Lupus gets bad, I feel like a useless lump. A Lupus Lump!

It’s hard not being able to do the things you used to do, like go to work, clean the house, take care of your kids (or pets), run errands, exercise… and you feel guilty for not taking care of your responsibilities. You probably have a hard time telling your family and friends how you’re feeling. It is important for your loved ones to understand how you are feeling about living with Lupus.

Here are some helpful tips on how you can start to feel better about living with lupus!

Start a Journal
You might think a lot of your feelings and ideas sound ‘stupid’. They’re not! To get comfortable with talking about your Lupus, it’s a good idea to write down what you think in a journal. Once you write down your feelings, it’s a lot easier to say them out loud to a person. It’s also a good idea to write down your pain symptoms that day – you might be able to find things that trigger your pain and can try to avoid those activities.

Ask for Help
Don’t be afraid to ask your family for help with chores you just can’t do on certain days. For instance, the most common place I get severe pain at is in my hands. The pain is there every day, so I can’t really carry or pick up things that most people can. My boyfriend knows this and he helps out by carrying the gallons of milk and anything else ‘heavy’. Pushing past the pain to get some things done isn’t the greatest idea; the pain can become worse, and you can seriously injure yourself.

Empower Yourself with Knowledge
When my doctor first suggested the possibility of lupus, I felt scared – mostly because I had no idea what it was. People are afraid of the dark because they can’t see what’s hiding there and their imagination runs wild. The more you know, the better off you are. The Internet is a great way to learn about Lupus. Make sure you write down questions you have for your doctor so you don’t forget them. Learn about the treatment options; you’ll feel a lot better knowing about the help available, and you can make informed decisions.

Connect With Fellow Lupies!
Talking to other people who have Lupus is perhaps the most helpful thing of all. One of the most frustrating things about having Lupus is feeling like people just don’t understand. Communicating with Lupus patients is great since they’re going through many of the same things; you can compare symptoms, offer support, and make friends who really understand. If you would like to talk about your Life with Lupus on this website, visit the Share Your Story page. You can read other stories here!