Jul. 10, 2018

Sharing the Journey: Developing a care team

The Sharing the Journey series is by people like you and for you. In their 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:

Who makes up your care team (medical and support) and what advice would you give someone who needs to develop a care team?

My care team consists of several important people in my life. My mom is my main emotional support and, since she has lupus too, she provides me with helpful tips and encouragement. My best friend/roommate is my other source of emotional support because she helps me to smile and laugh when I'm not feeling well and constantly reminds me to take better care of myself. The main doctor I see for my lupus is my rheumatologist. I consistently see him to make sure that all of my organs are taken care of and my lupus is not becoming more active. He is very knowledgeable and talks to me about practical ways to prevent lupus flares. My other main member of my support team is my GYN doctor. He takes care of me from the hormone side of things and is also in constant communication with my rheumatologist about the effects of the medicines he gives me (since lupus can be tied to hormones). And of course, I can't forget my ophthalmologist, who makes sure my eyes are healthy and show no signs of damage from the medicine I’m taking. – Becca

My care team consists of my immediate family and a good rheumatologist. My family knows me best and they know when I need the most help or want to be independent. It also helps to have a good rapport with your rheumatologist and primary care MD, or any other specialist. That way, if something goes wrong, you can count on having someone help deal with a flare. – Roxi

I would advise people living with lupus to consider an interdisciplinary approach. I visit my rheumatologist, cardiologist, nephrologist etc. But musts are also the dermatologist, therapist, physical therapy, and nutrition to come up with a plan of action for travel or summer life. I’ve even told my hairdresser that she’s a part of my team, because she has to work magic on my fickle hair.Monique
My care team is made up of my rheumatologist, who is so awesome and is very approachable. It is also made up of pain management, who are always very understanding and patient with me. My care team also consists of a physical therapist, cardiologist and neurologist. I have a great team of medical doctors. I also have loved ones who support me. It is very important to have this team, because there are days when so much is going on. It's good to know that they all work together for the good of my lupus care. My advice is to definitely get a care team together, because when you have different organs that are being attacked, that doctor or specialist is in place. It is so important. It makes things so much easier.Sylvia

As a young person working in a busy industry, it’s important that I have a care team that will encourage me and keep my health in mind. My mom also has lupus and we keep an eye on each other, watching for negative patterns and discussing our self care routines. I also have a great rheumatologist whose office is active online, with a portal where I can renew my prescriptions and ask questions between appointments without making time consuming calls during work hours. If your doctor offers a similar service, you should use it to your advantage. It’s also vital that my close friends understand my condition and are willing to make plans that won’t overtax my health. In short, make sure that your care team offers the support that you need for your day-to-day life! You need people keeping your best interests in mind for the long haul as well as for individual emergencies.Alex

Although the summer time means vacations, sun, and fun for most, for me it means having to be even more aware of the importance my care team plays in my daily battle against lupus. My support team of course begins with my doctors including my rheumatologist, pediatrician, on-campus physician, retina specialist, and many more. These doctors have become more like friends and personal cheerleaders since my diagnosis, but nothing compares to my friends and family. My family is a constant support system and never fails to check in on me every day even though I am gone at college. My best friends, along with the rest of my sorority sisters are my family away from home and never fail to make sure that I am the best version of myself even on my worst days. Finally, my mentor and coach is the extra set of ears I need on a hard day. She is always there to listen and tell me that I can do this even when I don’t think I can. Looking back on all of these people, the one piece of advice I could give to someone trying to establish a care team would be to surround yourself with people who believe in you although your disease may inevitably be “invisible.” When your doctors, family and friends all believe in you, then they are able to more compassionately care on your hard days and cheer you on during the good days.Tiffany

Building the support system you need

Managing a disease like lupus often requires more than one doctor. You probably have a medical team of doctors and other health care professionals who coordinate your care. But you also need a team of people who can give you emotional, physical and spiritual support. That support can improve your quality of life, and people who have more social support tend to do better physically and emotionally.

How do you build your support network? Think about your needs. Then, look at the important people in your life. Are they family members? Friends? Neighbors? You may also want to include coworkers, lupus support group members, or a therapist. Next, ask for help. A strong support system will have people who can help in different ways -- people you can count on when you need them.

Our guides can help you coordinate your medical care and strengthen your network, and you may want to join our online community, LupusConnect.