Finding Emotional and Practical Support During Lupus Clinical Trials

Participating in a lupus clinical trial may be helpful if you have exhausted other treatment options or simply want access to study medications. It can also be rewarding if you want to contribute to the body of research available for the lupus community.

That said, there’s understandably quite a bit to consider when you’re preparing for a lupus clinical trial, including what your support system will look like. Before you go through a trial yourself, it can be challenging to know what type of support you may need.

Here’s what to consider when recruiting support, both emotional and practical, during your clinical trial — plus, how to get comfortable asking for help.

The Importance of Emotional Support

Before you even sign up for or begin a lupus clinical trial, surround yourself with the people in your life who can offer knowledgeable, balanced opinions.

“It helps to have people who are supportive, but also knowledgeable about clinical trials and lupus,” says Christele Felix, a clinical researcher and Chief Operating Officer of advocacy group LupusChat.org, who has participated in two lupus clinical trials as a patient herself. “That way, if you need to talk through your decision to participate or to not participate, you have an ear to listen.”

Seek out the people who will celebrate your own decision-making agency and support you in making the best choice for yourself — rather than just telling you what to do. “When you make a big decision where nothing is certain, it’s important to be confident in your decision,” adds Felix. “It’s good to have people around you who reinforce your ability to decide.”

Once you make the decision to join a clinical trial, recruit your loved ones to help you through the initial stages.

“Having close social support is very helpful in mitigating the stress and anxiety a patient might feel, especially at the start of trials,” says Gaurav Gulati, MD, Senior Medical Director and Director of Rheumatology Clinical Trials at UC Davis Health.

When Emmitt Henderson III, CEO of the nonprofit Male Lupus Warriors, went through a lupus clinical trial at the age of 32, his family came to wish him good luck once he had been dropped off at the hospital by a friend.

“They knew that they couldn’t see me in a couple of days,” says Henderson. “It helped me feel so confident walking into that hospital, even knowing that once that door closes behind me, it’s just going to be me and the staff.”

Henderson’s treatment involved a bone marrow stem cell transplant and chemotherapy. Once the procedure was completed and he could have visitors, Henderson’s brothers and close friends came to visit him at the hospital.

That said, they weren’t there to ask him how his procedure went — they were there to give him a sense of normalcy. “They were talking to me and making me laugh as if we were still at home, just having fun,” says Henderson. “We played cards and that took me out of the whole element of being in the hospital. That is what I needed.”

At the time, Henderson hadn’t told many people beyond his family that he had lupus, so his support system was small but powerful.

Your support system also includes your research team, who you should feel comfortable sharing your concerns with. Typically, the research staff will ask you to report any health problems to them right away. This staff also includes doctors and nurses who will work with you and your regular doctors to address the problem.

“Your rheumatologist and you likely have a long-term close relationship in the difficult journey with lupus,” says Dr. Gulati. “That is another mechanism to find additional support.”

In addition to family and friends, your research team, and your routine doctors or specialists, consider and encourage local support groups and organizations to connect with other patients and their families with lupus.

With support groups, you may meet patients who have gone through similar experiences as you — and find comfort in their stories and advice.

The Importance of Practical Support

When preparing for a clinical trial, there are several important factors to consider. Here’s how to get ready:

Prepare Your Home and Work Life

Think ahead about the changes you’ll need to make at home and work during the trial.

For example, if you have kids, you might need to arrange for extra childcare or ask a friend or family member to help with household chores like cooking, grocery shopping, or laundry, especially if you experience side effects that make it difficult to manage these activities.

“During certain trials, your lupus may be very active or you might be going through a treatment course with side effects that can hinder your everyday activities,” says Felix.

Additionally, have a conversation with your employer about the time commitment. You may need to adjust your work hours or take time off during the clinical trial, so it’s important to discuss this upfront.

Understand the Logistics

Clinical trials can vary in their demands — some may involve daily or weekly visits close to home, while others might require longer hospital stays in a different city.

“The good news is that most, if not all, clinical trials now provide assistance with transportation for the trial, as well as a stipend to attend the research visits,” says Saira Z. Sheikh, MD, Professor of Medicine in Rheumatology, Allergy, and Immunology at The University of North Carolina at Chapel Hill. “If a study requires that you stay close to the hospital or research center, those costs are also covered by the clinical trial.”

Before you commit, make sure to ask about what expenses are covered and if there are any out-of-pocket costs you should plan for. Understanding these details can help you prepare.

Bring a Support Person

Bringing someone to your appointments can be helpful. “This can be someone to help you with questions or report your symptoms,” says Felix. “Especially if you have a caregiver support person who lives with you, they may be able to help relay certain things that you forgot, which can be helpful.”

Sometimes, just having someone in the waiting room, can provide comfort and confidence. “You need to prepare for how you’re going to get there, who’s going to take you there, and who’s going to pick you up,” adds Felix.

 Communicate Your Needs

Don’t hesitate to speak up if you have specific logistical needs. For example, if you need transportation to appointments and it’s not provided, talk to a family member or friend who can help. They might be able to give you a ride or help you arrange alternative transportation.

It’s okay to ask for what you need to make things easier on yourself.

How to Ask for Help

If you normally have trouble asking for help and try to do everything yourself, think of it this way: A lupus clinical trial is an opportunity to open up to those in your life who want to play a role in your health and well-being.

“When you don’t let your loved ones help you, you’re depriving them of being able to do loving acts for you,” says Felix.

Although many people with chronic illness are concerned about being a burden, asking for help actually opens the door for your loved ones to show their care and support.

“I try to not make it specifically about me, but also about the person who is doing the act of service for me,” says Felix. “This is a long learning journey, but we do need to learn that we can’t do it all ourselves as lupus patients. That’s why support is important.”

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This article was made possible with support from Bristol Myers Squibb.