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Q&A Forum

Q&A Forum: Social Media & Lupus

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Current world events have led to more isolation and less social interaction. Tools like social media have become a powerful source of information, research, and communication, especially as a way to learn more about health and wellness.

Check out this month’s Q&A Forum!

Social media has become an integral aspect in the distribution of lupus information, insights, data, and more. In a time where outside interaction is not an option for many Lupus Warriors, and taking care of the immune system is a priority, social media has become a vital tool. Whether it’s sharing personal thoughts and experiences with the lupus community, or staying updated on current research and trials, online interaction can be beneficial.

In this month’s LupusCorner Q&A Forum, Lupus Warriors share the role social media plays in their lupus journey.

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Sunshine Annie

Social media has played an important role in my lupus journey.

5/5 (strongly agree)

How do you use social media to help with lupus?

Gain insight into the disease
Talk and engage with the community
Share personal experiences and content

What role has social media played in your lupus treatment?

It has given me info based on real people’s experiences which is easier to understand than statistical info. Having people to reach out to that suffer & understand what you’re going through really makes it easier to deal with.

What are the benefits of using social media when it comes to lupus? What are the negatives?

Receiving understanding & support. If sharing with people that do not have lupus or know someone with Lupus, they tend to assume things about you or your situation. I can’t count how many times I’ve heard “no one can be sick so much”, “you’re just lazy” or the worst of all “you don’t look sick”.
person 5

Sandra Owens

Social media has played an important role in my lupus journey.

4/5 (agree)

How do you use social media to help with lupus?

Talk and engage with the community
Share personal experiences and content

What role has social media played in your lupus treatment?

I like that I can interact with other Lupus sufferers, especially those who feel that their Doctor doesn’t take them serious, and give them tips to find other options. Social Media gives Lupus Warriors a voice. That is very important to our health.

What are the benefits of using social media when it comes to lupus? What are the negatives?

The benefits are that Lupus sufferers can vent on each other about their experiences, whether it’s about trying a new drug or experiencing new symptoms. The negatives are hearing from some Lupus patients that they do not have a family support system. That makes me sad.
person-22

Teresa A.

Social media has played an important role in my lupus journey.

4/5 (agree)

How do you use social media to help with lupus?

Stay updated on lupus news
Gain insight into the disease

What role has social media played in your lupus treatment?

Actually right now it’s making me nervous and more afraid about going out or doing anything.

What are the benefits of using social media when it comes to lupus? What are the negatives?

It keeps you updated, on any new developments. But it can also scare you at the same time. There’s definitely pro’s & con’s to social media.
lupuscorner-person-26

Shan T.

Social media has played an important role in my lupus journey.

5/5 (strongly agree)

How do you use social media to help with lupus?

Stay updated on lupus news
Gain insight into the disease
Talk and engage with the community

What role has social media played in your lupus treatment?

When I was diagnosed in 1988 the only way I could research SLE was on microfiche at the local library! The internet has been such a valuable resource in my really learning about all the little details of what exactly is happening inside my confused body!

What are the benefits of using social media when it comes to lupus? What are the negatives?

I find that it can be consoling to hear about others’ experience with lupus. I definitely felt much more alone in this battle before I joined lupus-related social media groups. It’s really nice for those of us who live in more rural areas that don’t have in-person support groups to join. The only real negative I can think of would be if you forget that we each experience lupus differently & not assume that what is true for one person’s disease will be true for all of us.
lupus tips-person-24

Anonymous

Social media has played an important role in my lupus journey.

4/5 (agree)

How do you use social media to help with lupus?

Stay updated on lupus news
Gain insight into the disease
Share personal experiences and content

What role has social media played in your lupus treatment?

Ability to connect – not feel alone – ideas on managing.

What are the benefits of using social media when it comes to lupus? What are the negatives?

Pro: not feel alone
Con: not all info is helpful
lupus tip-person-12

Denise C.

Social media has played an important role in my lupus journey.

3/5 (neutral)

How do you use social media to help with lupus?

Stay updated on lupus news
Share personal experiences and content
Talk and engage with the community
Daily tips and ideas

What role has social media played in your lupus treatment?

In the past few months, I’ve had many friends and acquaintances ask about lupus, if I am on any of the drugs (Hydroxychloriquine), if I’ve been able to obtain it, and what are my side effects. It’s been good to have an open audience.

What are the benefits of using social media when it comes to lupus? What are the negatives?

Being able to share with others. But while some social media lupus sites are great, at times, I personally feel I need to unwind and back away from them. A lot of individuals on these sites are super negative, borderline on deaths door, or seem to be attention seekers. While I hate using the term ‘attention seeker’, since I have been judged myself, it just seems the same individuals sound like broken records. Hey, I really understand! I’ve felt like I’m in the wringer most of the time, but I’ve found that sometimes, that’s just the way it is, and be thankful for my life. Lupus patients need to be really pro-active with their care, and keep seeking answers. Some don’t want helpful info.

lupuscorner-person-30

Pam S.

Social media has played an important role in my lupus journey.

4/5 (agree)

How do you use social media to help with lupus?

Stay updated on lupus news
Gain insight into the disease
Talk and engage with the community
Share personal experiences and content
Daily tips and ideas

What role has social media played in your lupus treatment?

Information about tests, and community.

What are the benefits of using social media when it comes to lupus? What are the negatives?

Nothing like Face to face.

Pmonte

Social media has played an important role in my lupus journey.

4/5 (agree)

How do you use social media to help with lupus?

Stay updated on lupus news
Gain insight into the disease
Daily tips and ideas
Talk and engage with the community

What role has social media played in your lupus treatment?

It made me stay home and not go out. Had family members pick up food and medications. And made sure I didn’t believe everything I would hear to make me get upset.

What are the benefits of using social media when it comes to lupus? What are the negatives?

Some benefits are understanding lupus impact . And negatives knowing some people are worse off than me. Also some information was not true.
person-22

Lacey

Social media has played an important role in my lupus journey.

4/5 (agree)

How do you use social media to help with lupus?

Stay updated on lupus news
Gain insight into the disease
Talk and engage with the community
Share personal experiences and content

What role has social media played in your lupus treatment?

It has helped me to feel less alone, meet and connect with other lupus warriors. Also it has helped me to see pictures of other young women who use devices like canes or walkers, since I don’t often meet others who also use these in my daily life.

What are the benefits of using social media when it comes to lupus? What are the negatives?

Benefits are meeting others and feeling less alone. Negatives are feeling scared and sad when I hear about warriors who have passed away or are having severe complications.
lupus tip-person-2

Charlie

Social media has played an important role in my lupus journey.

3/5 (neutral)

How do you use social media to help with lupus?

Stay updated on lupus news
Gain insight into the disease
Daily tips and ideas

What role has social media played in your lupus treatment?

Updates on shortage of Plaquenil and valuable insight from other Lupus warriors.

What are the benefits of using social media when it comes to lupus? What are the negatives?

Benefits – insight from other Lupus patients and their experiences
Negatives – wrong or outdated information

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