Living with Lupus

Reviewed by: HU Medical Review Board | Last reviewed: January 2020

Living with a chronic condition like lupus means adjusting to uncertainty, change, and learning how to accept help when you need it. Adding to the challenge, it can take time to figure out the mix of coping skills and strategies that work for you. Here are a few suggestions for how others with lupus cope with their disease so that they can still enjoy life.

Coping with an unpredictable disease

You will need to communicate with friends and family about your lupus diagnosis so that they can support you. They need to know about your need for extra rest, or that your symptoms can be unpredictable in when they appear and change from time to time. This knowledge will help them understand when you turn down some invitations or unexpectedly have to cancel plans.

You may also need to include break times during group activities or ask for help with household chores. These are the people who will help you focus on what you can do rather than what you cannot.1

Going to college with lupus

Lupus can throw some extra obstacles in your path if you decide to attend a community college, technical school, or university. In addition to choosing a school, major, and classes, you also will need to prepare yourself financially and medically. The tasks ahead include:

  • Arranging health insurance
  • Finding a new healthcare team
  • Making arrangements to receive your maintenance drugs
  • Asking for special accommodations if you need them

Perhaps most importantly, you will need to learn time management skills so you balance studying and fun with friends with your need to rest.2

Working with lupus

Many people with lupus work, sometimes for years, especially if the type of job allows for accommodations. Some people find that they need to make adjustments to their work station, such as getting a different chair or keyboard. Others need a more flexible work schedule so that they can work from home or have more frequent breaks.

You may need to consult your doctor and a vocational rehabilitation counselor, who is a special type of job coach for people with disabilities. These professionals can help you decide if workplace accommodations will help you stay on the job longer, whether you need to change jobs, work part-time, or leave the workforce.1

Coping with finances and lupus

Lupus can be especially damaging to a person’s finances since it usually strikes during the prime career-building years of the 20s to 40s. Plus, the main symptoms of lupus such as fatigue, joint pain, brain fog, and time lost to doctor’s visits can make work-life hard or even impossible. Finding financial support can help relieve the anxiety of how to find money to pay for the extra expenses associated with lupus.3

Self-care and lupus

If you have lupus, there are several other steps you will need to take to reduce the chances of your lifestyle aggravating your symptoms or causing flares. A few common recommendations include:

Although there is much about lupus that is uncontrollable, taking an active role in your treatment, including adhering to a medication schedule and making healthy lifestyle choices, can give you a sense of control and help you live your life to the fullest.

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