I Just Found Out I Have Lupus, Now What?

So if you’re anything like me, when I found out I had lupus, I had no idea what it was or what it meant for my life. Like seriously, I had no clue if I was I supposed to be afraid, angry, or straight up worried. If you’re reading this because you were newly diagnosed, you’re probably overwhelmed by your new reality and you just want to understand what you’re up against.  Sadly, many people diagnosed with lupus for the first time may have heard the name of the disease before but have no idea what it really is. Since there is no “right “approach for dealing with an illness that has no cure, following some of the steps below may just help you cope a little bit better.

Allow Yourself To Feel

Regardless of how your physician broke the news to you about your diagnosis, you may be feeling a ton of emotions like, sadness, frustration, confusion, anger, damn… you may even feel numb. It may seem like a weight that you didn’t ask for was suddenly placed on your shoulders. In spite of all of the emotions you may be experiencing, it is imperative that you allow yourself time to fully process this newfound information. Whether you like it or not, this is your new reality so:

• Take some time to process what emotion is at the forefront.
• Focus on the now; take things one day at a time
• Be honest with yourself and know that being as healthy as you can be will require a lot of life changes
• Accept yourself as being a tender soul that is now going to require a little bit more attention, love, and care.

Lean on Your Support System

Now that you have acknowledged all of the emotions that you’re going through, it’s time to lean on that foundation of support. For some that may be family, friends, or a church. For others, it may be relying on the support of the lupus community. Managing lupus comes with its ups and downs.  Being able to freely express how you feel especially during flare-ups is important. When your support system understands your daily struggles, they’ll be better equipped to help you hence:

• Don’t be afraid to say how you feel
• As you learn more information about lupus share it with your friends and family
• Encourage your family to participate in lupus events like lupus walks, fund raisers, volunteer events etc.
• Join the “loop” with LUP of love to find lupus mentors or become a lupus mentee
• Show support to others with lupus, you’d be surprised to know what a little love could do

Take Time to Understand What Your Up Against – Block Out Negativity

By now it’s certain, you’ve already googled everything about lupus. Since lupus is not a bed of roses, your well-being is most certainly your responsibility. People will be negative about your illness, they will paint a picture that has limitations, but know this, you CAN live a full life with lupus! Always remember that no one knows your body as well as you.  Don’t be afraid to validate information for yourself shucks, second-guess everything if you must. Knowing what triggers fatigue or even when to take a break can be extremely important:

• Never stop seeking knowledge about lupus
• Understand that your diet plays an important role in how healthy you remain.
• Don’t be afraid to ask your doctor questions. Write them down until your next appointment if you have to
• Don’t except everyone’s opinions, filter what you need and verify it then, discard the rest
• Understand your body, take note of how you feel during your daily activities to better understand yourself
• Keep a journal and write, write, write. Sometimes even going back to it can allow you to remember how far you’ve come.

Don’t STOP Living

The most important point to remember, having lupus doesn’t mean you have to stop living!! You are entitled to a full life, one crammed with happiness and appreciation.  Too often, limitations are placed on people with lupus. You will frequently hear about all of the things you “can’t” do because of your illness but I am here to tell you this, there is a lot that you can do.

• Count your blessings. Life is indeed the greatest gift of all
• Spend as much time with the people you love
• Learn when to say “No” without regret
• Say “Yes” sometimes to things you’ve always wanted to do
• Write a bucket list if you can, share it with your friends and family
• Get involved in the lupus community. You have no idea how sharing your journey and story with others can help them overcome hard times
• Join the “loop” with LUP of Love and advocate for others