I Have Lupus…….What Now?

When you are newly diagnosed with a big life altering disease, like lupus, there are so many  things going through your head. So many thoughts, so many feelings. You’re thinking about things like, how or if you will tell those closest to you, including your coworkers, and boss. What your life may look like long-term, will this change your goals, etc. 

Beyond all that worry there is likely a feeling of overwhelming relief. That all the things you’ve been feeling and dealing with are REAL, and NOT all in your head.

Getting a big diagnosis like this is unlike any other experience.

That experience will truly shape how you look at medicine in the future. Whether you were told via email, or at an office visit where you had time to ask any and all questions. But what’s next?

You’ve gotten the diagnosis of Systemic Lupus Erythematous - what do you do next?!

Diagnosed with lupus...what now?

Find doctors/providers who you feel comfortable with and who listen

Chances are when you had labs and other tests come back pointing to something rheumatological, your doctor put in a referral and you got the provider who had the first available appointment. So you didn’t have any say in who you saw.

Many people don’t know that doesn’t mean this is the doctor you have to stay with for the entirety of your journey. If the two of you don’t mesh, or you don’t feel as though you are being listened to, you absolutely have the right to search for other providers in your area to get a second opinion.

A strong doctor-patient relationship when treating long term illnesses is imperative in finding the best treatment option for you.

Continue (or begin) tracking your symptoms

If you have read any of my other articles you’ll know I am a HUGE advocate of symptom tracking. I feel it is one of the most important things we as patients can do. Because as I always say, from my years of bedside nursing and over a decade as a chronically ill individual, doctors/providers just do better when they can have something physical to look at.

It means much more for them to see that you’ve had pain at a 6 or consistently above a 4 for days. While also being able to see what you tried to get your pain under control versus you just telling them.

So what should you track?

From my experience, it is important to track:

• Pain: the high and the low, location, if anything makes it better or worse, and what if anything you tried to control the pain.
• Fatigue: if it was your tolerable normal, more fatigue or less then normal.
• CNS: any cognition issues.
• Then if you have any other body symptoms document those too!

Do your own research

I am sure as you’ve been on the journey to get a diagnosis you’ve learned how to research. But I want to be that annoying voice that reminds you to make sure the sites you are using are legit sites. 

If you aren’t careful you could end up finding really scary information that doesn’t pertain to you! So remember to use sites like the NIH, the Lupus Research Association, The Lupus Foundation of America, and big teaching hospitals like Cleveland Clinic or Mayo Clinic.

As you research, make sure to jot down questions you might have for your doctor the next time you see them.

Find your support person/team/group

The time following your diagnosis can be overwhelming. That said, it can be really helpful to be able to talk to people who are going through similar things. There are TONs of online/facebook/social media support groups out there. Along with many in person groups across the country.

The important thing to remember when searching for a support group, is that not every size nine shoe fits a size nine foot. Meaning not every group will be for you, and that’s okay! That’s what’s great about the internet, there are tons of options. 

I couldn’t find one where I felt at home. So I started my own, and now those women are some of my best friends, even though we’ve never met face to face.

Give your spouse/family/friends time to get a grip and adjust to the diagnosis and new norm

This may be a little controversial, but I feel like this is not something that gets talked about. We always focus on ourselves and how this new diagnosis is going to impact us. But those closest to us will be dealing with changes too.

As we start new medications that make us feel yucky, or the fatigue gets really bad. They may have to step up and help in ways they haven’t before. So while you are giving yourself grace, remember to extend that to those closest to you as they adjust too.