Newly Diagnosed

Guidance for the Newly-Diagnosed Lupus Patient from Lupus Colorado   

As a newly diagnosed lupus patient, you probably already know that reaching the diagnosis of systemic lupus erythematosus doesn’t come easily. A single blood test or doctor’s visit won’t result in an affirmative diagnosis. It’s often diagnosed after months—even years—of lab tests and doctor’s appointments.

Since your diagnosis, you’ve likely been attempting to understand of the signs, symptoms, possible treatments, and outlook for this disease. While Lupus Colorado can help you .2 2
with disease understanding, this handout focuses on how we can help you deal with emotional and practical implications.

There are more than 20,000 lupus patients in Colorado. Your doctor has likely explained to you that lupus presents differently in each person it affects. At Lupus Colorado we think this unique presentation is precisely why you need to play an active role in your treatment.
In our 40 years of serving Colorado, we’ve helped many people move from merely surviving lupus to thriving with lupus—regardless of the severity of their symptoms. Lupus Colorado has tools that can help you accept your disease, work well with your medical providers, and find emotional support. And, we can provide emergency financial assistance should you find it necessary.

NEW – Trying to understand autoimmune diseases and explain them to others can be complicated. This video can help those who are diagnosed with lupus gain a better understanding of the disease and can help them communicate it to others. Simply click on the link to start the slideshow.

Lupus Slideshow in English

Lupus Slideshow in Spanish

Helping your medical provider by doing your part.
The difficulties of diagnosing and treating a disease that presents  differently in each patient can be frustrating for doctors and patients alike. That’s why it’s important to understand the role you play in helping your doctor appreciate your experience.

When you have lupus, you need to learn how to live with it. But the mindset of acceptance is counterintuitive for some. This makes sense, considering our society’s drive to “fight”—whether it’s fighting discrimination, fighting hunger, or fighting a disease. But Lupus
Colorado hopes you understand this: No amount of fighting is going to stop your lupus. In fact, the more you try to “fight” this disease—by working through the pain and ignoring the fatigue—the sicker you may become.

How we can help.
You and your doctor will exchange a great deal of information during the limited time you meet. Even patients not experiencing a lupus “mental fog” can easily forget the questions they planned to ask and become overwhelmed by the new language you’re just learning to speak. Our tools, like an “Ask the Doctor” checklist and a “Color My Lupus” diagram can help you track your own symptoms and describe them to your doctor. Many patients report that by-tracking your activities, symptoms, medications, stressors, and even time spent outdoors—patterns will emerge. Together with your doctor, you’ll start to understand how lupus attacks your body, and the role you play in preventing those attacks.

Dealing with the emotional impact of a chronic disease.
Lupus doesn’t just affect your body. We’ve seen how lupus can affect a patient’s sense of self. When a typically active person isn’t strong enough to get out of bed, it can be devastating. The patients we’ve worked exhibit a wide range of emotions. It’s okay to be scared—for yourself and your family. Anger is also common, as is being sad and mourning the life you had planned to live.

Guidance for the Newly-Diagnosed Lupus Patient from Lupus Colorado
We know lupus can also be frustrating. Maybe you experienced a nasty side effect from the “well-tolerated” drug that helps most patients. Or, you feel great for a week, only to be stuck in bed for the next two. The pain, confusion, and unpredictability of lupus make it easy for depression to set in.

How we can help.
Sometimes it helps to talk to someone who knows what you’re going through. That’s why we have developed a network of patients throughout Colorado. Whether you meet others through our support groups, or you connect with someone through our one-on-one networks, having someone who understands can help you to deal with the emotional impact of lupus.

If you are not looking for personal support, you can get to know others in Colorado who are thriving with lupus through our newsletters, website, Facebook page, and events. Each are filled with practical information—from ways to work towards acceptance of your disease to the signs and symptoms of depression to healthy living tips.

Asking for help when you need it.
It’s hard to ask for help and most lupus patients can benefit by learning how. Fatigue is present in most lupus patients and increased levels of fatigue often indicate that your body needs to rest.

You can start slowly. Take your spouse up on that offer to pick up dinner. Let your mom take your kiddos to the park for an hour so you can nap. Talk to your employer about modifying your work schedule.

How we can help.
The expenses you may face can quickly add up, even with health insurance. Whether you need help paying for this month’s electric bill or next month’s insurance premium, contact us if you need one-time emergency financial assistance.

We can also connect you with resources you may need to adapt to your new lifestyle. This includes access to medical equipment, rental assistance, disability resources, transportation, employment, and in-home assistance. We can even help you find grocery stores that deliver and products to protect yourself from the sun.

It’s not all about loss.
Many patients express a sense of loss associated with lupus. But many others have told us that there is much to be gained. Patients have expressed just how thankful they are to be part of and have access to a community of caring, dedicated, and empathetic people.

Lupus may have forced your hand, but it does give you an opportunity to know yourself better. Perhaps it will lead you to a different, but personally fulfilling career. Maybe your social calendar will include only events that are really important to you. It could mean a shorter list of “must do’s” and even a “get out of vacuuming free” card. The nature of lupus gives you permission to slow down, revisit your priorities, and seek out ways to enjoy your life.