Sharing the Journey: Advice for Newly Diagnosed

The Sharing the Journey series 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.

This month, we asked Sharing the Journey participants the following question:

What advice would you give to somebody who has just been diagnosed with lupus?

Being newly diagnosed with lupus can be overwhelming, so taking a deep breath is first. Educating yourself on the disease is super important, that way you know all the signs and symptoms lupus can cause, and be prepared to handle them. Talk with your family and close friends and educate them as well, so that they know how to better support you. Keeping a journal of symptoms or questions is a great help, so when you go to the doctor you don’t forget how you felt a week or a month ago. Also, a lot of hospitals or lab companies provide electronic health records, I highly recommend signing up for that so all your medical records are easy to obtain for different doctor appointments. – Roxi 

The most important thing I did when I was diagnosed with lupus was educate myself about my disease. I read as many articles as I could find on lupus.org and subscribed to their newsletter. This helped me to identify odd symptoms I was experiencing and link them to my disease. I also learned tricks and tips to help prevent lupus flares. Next, I opened up to several close family members and friends about my disease. This helped me establish an understanding support system that was invaluable when I was struggling. Last, I reframed the way I looked at my life and how I spent my time.  Instead of scheduling activities based on how much free time I had in the day or in the week, I began taking into consideration my fatigue level and used that as a guide for helping myself plan and structure my days. And of course my faith was a wonderful support system for me during this time of transition. – Becca 

People are being diagnosed with lupus daily and it can be so overwhelming so I would give them the advice, I believe, would help ease the panic. First, I would tell them they are not alone. Although there isn’t a cure, there are many people living with lupus. I would advise them to ask their doctor if they know of any support groups (my doctor’s office had flyers in the waiting room), look at Lupus Foundation of America’s website and check social media for support groups to join. Talking to others who understand you is essential.

Secondly, I would tell them they are their best advocate. It doesn’t matter if it’s at work and you need accommodations or with your doctor needing medical attention. You know your body better than anyone. Your feelings are valid. Your symptoms are real. Continue to seek help and push for your needs until someone listens. You deserve to have a great quality of life so keep advocating for yourself.

Lastly, I would tell them to listen to their bodies. This is imperative!!! Rest when your body tells you to rest. Do not ignore your symptoms. Write them down and keep a daily log of how you are feeling, notating if you believe your symptoms are correlating with weather changes, activity and/or any other factors. Your body will warn you of many things like if your vitamins are low, if you need to eat, if you need to slow down, if you need to stop and rest, etc. Please take heed to the warnings and that alone will save you from a lot of turmoil!

You can do this! We are in this together and we will win! – Angel 

My advice would be to make sure you have a great support system. It is so important because there will be bad days. When I think of the last lupus flare I had, it literally had me in the hospital. I was swollen and could hardly move. I ended up crying at my Rheumatologist’s office. She looked at me and promised I would get better. This meant a lot – the fact that I had a understanding doctor that cared meant everything to me. Within two weeks I was pain free and all those miserable symptoms had left. I strongly recommend finding a great doctor and having the love of family and friends. It will get you through those days when you feel “I can't make it.” – Sylvia 

The first advice that I would make is to tune into the trouble you are having and learn to identify symptoms versus fear, and respond with kindness to yourself. Everyone with lupus will be different. Feel love and caring for yourself as well as those who are caretakers for you. Also, learn how to recognize what potential symptoms feel like so you can easily read yourself to know when you’re starting to have a flare up of the disease. – Betsy 

Lupus is not easy to deal with. Everyone’s lupus is different and affects them differently. When I was 12 years old I was diagnosed with lupus. I was depressed, confused and worried about what will happen to me. I found support through friends, family, counseling and my doctors. Things will change. For instance, I was always tired so I couldn’t go out all the time like I used to and do activities. I had to be accommodated in school and got on a 504 Plan. I had to change my diet to a renal diet and cut out a lot of foods I loved. I had to go through treatments that were life changing, but it helped me reach remission. I was constantly in a doctor’s office each month for visits and getting labs done. Everything changes, but you have to have the right mind set to push and fight through this journey of lupus. – Kyra 

If I could go back to when I was first diagnosed, I’d tell myself to reach out to others living with lupus. You will be ok, but hearing that from others going through the same thing and knowing you’re not alone helps tremendously. Being able to talk to people who have the same symptoms as you can put your mind at ease. So reach out...use social media, hashtags, Lupus.org, anything you can think of. There are tons of us with lupus who would love to help as much as we can! – Nicole 

If you are newly diagnosed with lupus, it can be a time that is full of emotions. The information you receive can be overwhelming, but it’s important to understand the disease by speaking with your doctors and reading information from trusted sources. 

It’s also important to take an active role in your care and treatment. Part of this means having a plan and preparing for doctor appointments. You can make the most of your appointments by: 

• Tracking your symptoms and how you’re feeling in a medical journal
• Making a list of the medications and supplements you’re taking and bring it to appointments
• Writing down questions you may have for your providers
• Requesting a written summary of your visit with follow-up instructions

Finally, it’s important to learn ways to cope with the disease. This can include learning how to talk to family and friends about lupus, finding support from others, and learning how to take charge of your lupus journey.