How to Find Support for Coping with Lupus

Find a Lupus Support Group

Getting support for lupus can be life changing. Support is especially important if you're feeling alone and misunderstood. It can provide a sense of belonging and community. There are several ways to get support for coping with lupus.

For example, a wealth of information is shared at support groups -- like doctor referrals, coping tips, and other lupus-related resources. People with more years under their belt coping with the disease can provide guidance and validation to those who are recently diagnosed.

You might prefer one type of support over another, or you might find that more than one method works for you. It doesn't matter what you choose, as long as you find something that helps you. Choose what works best for you. 

1
How to Find a Support Group

Diverse friends hanging out in library or coffee shop
Steve Debenport/E+/Getty Images

One way to find a support group is to do an Internet search. Type in search terms like lupus and your location. For example, a search using the terms lupus and Michigan turns up results for the Michigan Lupus Foundation. You can also try one of the lists of lupus organizations in the section below.

Keep in mind that lupus organizations tend to located in cities, states, or regions, so there might not be one in your immediate area. But that doesn't mean they don't extend groups or other services to areas near you.

When you find the closest lupus organization to you, give them a call to find out about their support groups and other services.

If you do not live in the United States, lupus organizations can be hard to come by, though some do exist. Do an Internet search for them. If you don't find one, try finding an arthritis organization. If that doesn't work, search the Internet for rheumatology departments at hospitals near you, or find out who is doing lupus-related research in your region or country and contact them.

2
Lists of Lupus Organizations

Purple Ribbons Backgorund
Alex Belomlinsky/DigitalVision Vectors/Getty Images

Since most lupus support groups are run by lupus organizations, it's helpful to know who they are so you can contact them. Here are the major lists of lupus organizations out there:

Try the Lupus Research Institute's list of National Coalition members, a group of independent lupus organizations in the United States.

The Lupus Foundation of America has chapters across the United States and also has a resource that lists organizations outside the United States.

Molly's Fund, although based in Oregon, hosts support groups throughout the United States, as well.

3
Online Support Groups

Young man using laptop on bed, Cape Town, South Africa
BFG Images/Getty Images

Sometimes in-person support groups are too far, or you don't have the energy or time to get there. Online groups and forums are also great ways to find support and connect with people. You might even meet someone who lives near you.

If you are concerned about privacy on the Internet, disguise your name and check your privacy settings on any website you decide to use.

You can do a search of #lupus on any social media platform, including Facebook, Twitter and Instagram. You will find many people with lupus talking about their experiences, advertising events, hosting lupus Twitter chats or Facebook groups.

You can also do an Internet search for lupus message boards or lupus forums that are hosted online. My Lupus Team advertises itself as a social network for people with lupus.

Molly's Fund also hosts online support groups in the form of Facebook chats.

There are many online options. Try them out. See which one you like the best.

4
Thinking About Starting Your Own Group?

Woman leading grouup therapy
Tom Merton/Caiaimage/Getty Images

If you're thinking about starting your own group, it is a lot of work but it can be done.

Luckily, Molly's Fund can help you. If you're interested in starting a group in your area, email them directly at info@mollysfund.org.

5
Telephone, Peer Support

Young smily pretty lady on her smartphone in cafe
Yiu Yu Hoi/The Image Bank/Getty Images.

If you live in the United States, the Hospital for Special Surgery has national telephone-based support programs for people with lupus. According to their website, their programs are free and multi-cultural:

  • "LANtern® (Lupus Asian Network) is a free national support and education program for Asian-Americans with lupus and their families.
  • LupusLine® is a free national telephone peer counseling service focusing on one-to-one support for people with lupus and their families
  • Charla de Lupus (Lupus Chat)® is a free national peer health education and support program for Spanish-speaking communities with lupus."

6
See a Psychotherapist

Hispanic woman at therapy session
Blend Images - Ned Frisk/Brand X Pictures/Getty Images

Seeing a psychotherapist (talk therapist) will provide you with the individual attention that you will not get at support groups. Groups are incredible sources of support, but they are not meant to provide the space to explore emotions in depth. A therapist provides you that space. They can help you cope with issues related to lupus and beyond.

A common concern is that a therapist will force you to take medication. That is not the case. If you have a mental health condition and your therapist feels like medication might help, they will speak with you about this.

But unless you are to the point where you can no longer care for yourself, or are a danger to yourself or others, your mental health choices are ultimately your decision.

You can explore your concerns about medication with your therapist, just like you do with your rheumatologist, so that you can make informed decisions about your healthcare.

You don't need to have a mental health condition to see a therapist, however. Simply put, it provides you with a space to talk about what's on your mind, and it provides you with someone whose attention is focused only on helping you. In our busy world where our attention is often on others, this can be a necessary and healing space.

When looking for a therapist ask them if they have experience with providing therapy for people with lupus or chronic illness. If applicable to you, also ask if they do video chat (e.g. Skype) or telephone sessions. These will help on those days that traveling to the appointment is too physically challenging.

And if you have mobility issues, double check that they have a ramp or elevator.

Always make sure that the sessions are covered by your insurance, whether they are in-person, video, or telephone.

7
Connect with Someone with Chronic Illness

Three senior girlfriends having fun in the park : Stock Photo Comp Embed Share Add to Board Caption:Three elderly women holding one another and laughing out loud, outdoors in a green environment on an overcast day. Three senior girlfriends having fun in the park
Lucia Lambriex/Taxi/Getty Images

One way to find support is to connect with a friend who has lupus or another chronic illness.

Learning that a friend has a chronic illness can create a new level of friendship that wasn't there before.

Speaking with someone else who has the lived experience of lupus or chronic illness can help reflect back your own experience to you. It's comforting and a relief to share stories with someone else who understands what you're going through. Feeling understood has a powerful effect.

Getting Support is Worth a Try

In this information age, it's easier to find and get support for lupus than ever before. Lupus support can be life changing for some, especially if you are dealing with feeling isolated. For that reason alone, it's worth a try.

Continue Reading