Healthy Living

Support Groups for Lupus: Finding Balance While Battling Your Disease

Support Groups for Lupus: Finding Balance While Battling Your Disease

Key Takeaways

  • Support groups for lupus can provide a sense of connection, financial support and a form of therapy.
  • The Lupus Foundation of America (LFA) is a lupus organization that provides patients and their families the support they need to improve the life of the patient.
  • Lupus UK is a leading charity that supports patients of systemic and discoid lupus. 

Support groups are created to compensate happiness, encouragement, and hope to those individuals who need them the most. Support groups provide the opportunity to be truly “supported” by someone during a sorrowful and unpredictable “roller coaster” of your life. As patients can share their ups and downs, happiness and sadness, excitements and disappointments, support groups for lupus have amazingly helped them to overcome feelings of loss, anxiety, anger, isolation, and loneliness caused by this chronic illness. Many patients have said they’ve been misunderstood and excluded by their friends, colleagues, and even those who are close to them because of their illness, which is why support groups are created. Also, support groups for lupus give chances and opportunities for people with the same disease to gather at a regular time every week or once a month to talk to each other. These support groups establish great connections towards the patients and let them know they are not alone in this battle.

Advantages of Joining Support Groups for Lupus

To fully understand why and how support groups can be helpful towards lupus patients, the following points will give vivid explanations about the condition:

Financial Support

It is quite common that not all patients with lupus are financially fortunate. Thus, financial needs are one of the most effective and practical ways to help the patients. It is because to cure such disease; they need money for their maintenance and medications, which are essential in their condition. Moreover, the financial support is a great help not just towards the patient itself, but it also covers the joy of their families for it will lessen the burden of monetary issues. Most support groups for lupusdo not only offer emotional and psychological help to the patients. Some organizations also double as a charity group that helps its members regarding medications and maintenance.

Form of Therapy

The support group also sets as a good therapy session for its members because it initiates a gradual healing process, emotionally and mentally, for it takes care of isolation and other negative emotions.

Sense of Connection

Knowing that the members of a lupus support group share the same illness and experiences, it helps them develop a sense of connection. This helps boost their emotional and physical well-being. Moreover, this connection strengthens the wellness of a person through their personal experiences and struggles.

Adaptation

It also boosts their coping skills and understanding their illness through proper awareness of their situations and conditions. Joining support groups will help them prepare for the disease such as how to cope with the flares, proper medications, as well as having access to possible organizations and charities that could help shoulder their finances.

Structure

A lot of support groups have meetings on scheduled dates for the whole year. These meet-ups and meetings are something that lupus patients can look forward to in which they can experience a bit of normalcy in their social life by mingling with other people who understand their condition. This structure helps the patients expand their circles and get to know individuals whom they can rely on and confidently talk about the disease.

Motivation and Hope

Support groups also build up motivation and confidence of the members because as they gain the trust of each other, they motivate each other as well. Support groups possess the traits of being a family which is relevant and significant towards the well-being of the patient.

Information

They are also a group who seeks a cure to their illness. They are up to date when it comes to research, trials, and possibilities for new medications as you hear and share the news with each other. The good thing about support groups is that they are not limited to one area and can also happen in homes, clinics, offices, libraries, and religious institutions which are quiet and suitable for the support group’s event. It is also a great avenue for lupus patients to share and listen to the story of one another. It creates a bond which is a form of medicine that is actually beneficial for the lupus patients who are undergoing a certain struggle.

Different Support Groups for Lupus

The following lupus groups have been substantial evidence that even our smallest actions can make a big difference:

The Lupus Foundation of America (LFA): The Lupus Foundation of America (LFA) is a lupus organization that provides lupus patients and their families the support they need to improve the life of the patient. The Lupus Foundation of America is based in Washington D.C but has offices and branches all over the United States to fulfill its goal of providing local support groups to patients. This makes support groups for lupus reachable and readily available to the patients. Moreover, LFA also manages research, educational activities, and other advocates that could help lupus patients and widen people’s awareness about this chronic disease. They significantly step up their fundraising efforts to ensure they reach their disease-specific goals. Their primary goals are the following:

  • Reduce the time to diagnosis
  • Ensure people with lupus have an arsenal of safe and efficient treatments
  • Expand direct services and increase access to treatment and care

Molly’s Fund Fighting Lupus: This support group creates a community that helps the lupus patients. They do build many programs such as:

  • Client Assistance Program
  • Local Lupus Support Group
  • Online Support Group

The programs create awareness about the disease as they share stories to let other patients relate and help healthy people to understand. The organization also accepts donations from private individuals and recruits volunteers to help them implement their goals and events like symposium and community events. They also implement the following events which are timely and relevant to lupus patients:

  • Annual Butterfly Walk
  • Lupus Awareness Month
  • Serving Up Style
  • Lupus Symposiums and Webinars

Lupus UK: Lupus UK is a leading charity that supports patients of systemic and discoid lupus. Lupus UK is also the only charity that is registered in the country. With over 5,500 members and several regional groups all over the UK, Lupus UK does not come short in providing support through fundraising, medical talks, as well as publishing relevant newsletters and magazines for research purposes and welfare of the lupus patients. They have a vision in which lupus patients can still live life to the fullest. They also wish to give people the power of knowledge and offer information about lupus. They make sure people with lupus have a voice that can be heard and help them manage their disease. The following are the values embodied in the charity’s vision:

  • They want to improve the lives of lupus patients.
  • They think people with lupus are entitled to specialized care and treatment.
  • They push that lupus patients have the right to the best possible information about their condition.
  • Medical professionals and the general public should be well-informed and educated about lupus and its effects.
  • They believe that bringing together those people with lupus will help build a community that doesn’t isolate and exclude.
  • Lastly, they believe that listening to people who want to talk about lupus will help build a welcoming community and widen general awareness about the condition.

Final Thoughts

All local support groups aim for the same objectives in helping and handing a hand towards the lupus patients. They share the same purpose and advocacy that will indeed help the patients. Support groups become a wonderful way for us to create a community which is inclusive and accepting that helps its members manage and live their condition better, despite the struggles and battles in this exhausting and unpredictable chronic illness.