Dec. 12, 2016

Sharing the Journey: Time Machine

This series – Sharing the Journey – is by you and for you. In your own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day. Mostly, we celebrate what makes the lupus community strong by sharing our journey, together.

 

Imagine that you can travel back to the time when you were first diagnosed, and let us know what you would tell yourself to better prepare for the journey ahead.

 

Life with lupus simply means you will have a different life and that does not equate not having a life. Yes, adjustments will need to be made and flexibility will most definitely be in order, but the sooner you accept and embrace your new life the sooner you can begin living it. It is the only life you've got so give it all you have and make it count! - Lisa Taylor, age 33

I would tell myself to be positive and hopeful.  The journey that lies ahead of you is going to be a tough one.  Some days are going to be pretty ugly and you are not going to know what to do.  But then, there will be brighter days that will bring you joy and hope.  Every time you feel a glimpse of hope save it! Hold it in a place where you can come back to it on tougher days, so you know that brighter days always lie just up ahead of you.  Nothing lasts forever, the good days nor the bad days.  So take advantage of every moment.  When the days are hard, remember they will be over soon. And when you have great days, cherish your health and live out your dreams! - Nicole E. Waitt, age 23 

I would tell myself to take this journey one day at a time and it's fine if I don't feel up to doing certain activities. I would be more encouraging so I won't be too hard on myself. - LaTrease Brown, 31

First of all, the journey ahead will be tough and frustrating yet highly rewarding.  This disease will teach you how to take care of yourself and respect your body, and you will be an all-around better person for it.  Second, everyone experiences this disease differently.  Take time to learn to recognize your particular symptoms and ways to relieve them.  Third, find a strong support group of friends and family who will encourage you to take care of yourself while not always focusing on your disease.  Fourth, rely on your faith. - Becca Mighell, age 20

I would tell myself that everything is going to be okay. At times it may feel like it will never get better but it will. Things will get hard, and this will be my hardest battle but I will come out okay. I might come out of it with scars, but it's just beautiful a reminder of my story. I would tell myself that you may want to give up but the fight is so worth this life. -Jazmine Trujillo, age 22

Since I was diagnosed after three years of tests and speculation I would tell myself that it gets easier from here. After finally having a diagnosis, the rest of my lupus journey was easy compared to the three years of wondering. I would tell myself that you can and will do all the things you set your mind to but it might not happen just the way you want it to. This journey that you have now been put on will offer many obstacles but through support, love, faith and just plain stubbornness sometimes, everything will work out. I would tell myself that being sick doesn't stop you from reaching for the stars it, just makes the journey a bit more interesting. - Michelle Taylor, age 26 

I would tell myself that the diagnosis is not the end of the journey but rather the beginning and to keep pushing and fighting through whatever comes your way. There will be many times where you will feel that hope is lost, but remember you aren't alone. Keep the faith and remain strong. - Ren Hall

I would tell myself to stay positive and not think anything worse could happen. When I was first diagnosed it was a scary time. I had many thoughts going through my head. I sometimes would find myself thinking about the negatives of the situation. I believe that this was a terrible thing to happen to me but I feel as if I should've been able to keep a positive mind set. I would've liked myself to not question the possible dangers of the situation. Now I am positive about my life every day. I wish I was always able to have that attitude. - Kylie, age 17

Be ready for anything, you never truly know what to expect. Be patient, humble, and do everything possible to maintain a positive outlook. Surround yourself with loving, understanding, and supportive people. Keep your mind busy and do your best to be productive. It's easy to be consumed by the disease and say, "poor me" or "why me?" After the diagnosis those questions or statements don't matter anymore. It's time to dig deep, learn your true strength, listen to your body, and figure out the best way to live with the disease. It's not the end of the world, for me, it was a new beginning. - Victoria Gibbs, age 31

 

What You Should Learn When You Are Diagnosed with Lupus

It’s not easy to find out you’ve been diagnosed with a chronic illness. If you recently learned you have lupus, you are likely experiencing grief and anxiety as you wonder what this disease will mean for you and your family. At first it can be overwhelming as you try to learn everything you need to know, but the best way you can become empowered is to be informed. Here are some basic questions to answer as you begin your lupus journey:

  1. What exactly is lupus and what causes it?—Lupus is a complex autoimmune disease and there is still a lot that scientists don’t know about how it works and what causes it. But you don’t need a biology degree to learn the basics of what is (and isn’t) happening with your body.
  2. What kind of doctors treat lupus?—Most people with lupus need to be treated by a rheumatologist, but depending on your symptoms you may need other doctors, too. Finding the right medical team is an important part of getting the right treatment.
  3. What are common triggers of a lupus flare?—There are a number of environmental triggers that can set off your illness. Knowing what these are will help you avoid them.
  4. How will lupus affect my family?—Communication with your family is key. Make sure they understand your fatigue, joint paint, etc. and don’t be afraid to ask them for help.
  5. How will lupus affect my career?—Between fatigue and frequent doctor appointments, it can be more difficult to maintain your career when you have lupus. However, there may be changes you can make to your work schedule and office environment to make your job more manageable. It is also important to understand your workplace rights under the Americans with Disabilities Act.