Communicating about chronic illness on social media sites can be beneficial, but can it also be harmful? IN 2014, PEW Research Center reported that 74 percent of adults interact socially on the Internet. 1 Whether it’s Twitter, Facebook, Reddit or Tumblr, social media platforms have one thing in common: self-disclosure. They are sites where people often reveal personal information about themselves to friends, acquaintances and, sometimes, strangers. Hundreds of types of messages for as many different reasons are posted on social media sites. The quick, harmless posts range from “Lasagna for dinner tonight!” to vacation highlights, com- plete with “Wish you were here” tags and pictures. But, there are also the potentially harmful personal posts about feelings and well-being. Due to the very nature of the Internet, which promotes scanning over careful reading 2 — not to mention that text is devoid of tone — it becomes difficult to determine when these types of posts are appropriate or not. For chronically ill people and their friends and family, social media sites can become the canvas upon which their emotional and physical health is publicly displayed. Most of us have seen examples of this. For instance, someone wants their online friends to know they’re feeling particularly ill, so they “overshare” about their diagnosis, posting gritty details in hopes they offer catharsis, understanding or both. Upon reading these posts, some might feel sympathy and reach out, whereas others might feel uncomfortable and pull away. And when this type of information is repeatedly shared, some might begin to view the poster of these messages in a differ- ent, sometimes undesirable and awkward light. Whether such a response is fair is beside the point, but knowing that negative perception is a possibility is helpful when using social media. By Meredith Whitmore 32 IG Living | December-January 2017 | IGLiving.com
Transcript
Communicating about chronic illness on social mediasites can be beneficial, but can it also be harmful?
IN 2014, PEW Research Center reported that 74 percent ofadults interact socially on the Internet.1 Whether it’s Twitter,Facebook, Reddit or Tumblr, social media platforms have onething in common: self-disclosure. They are sites where peopleoften reveal personal information about themselves to friends,acquaintances and, sometimes, strangers. Hundreds of types of messages for as many different reasons
are posted on social media sites. The quick, harmless posts rangefrom “Lasagna for dinner tonight!” to vacation highlights, com-plete with “Wish you were here” tags and pictures. But, there arealso the potentially harmful personal posts about feelings andwell-being. Due to the very nature of the Internet, whichpromotes scanning over careful reading2 — not to mention thattext is devoid of tone — it becomes difficult to determine whenthese types of posts are appropriate or not.
For chronically ill people and their friends and family,social media sites can become the canvas upon which theiremotional and physical health is publicly displayed. Most ofus have seen examples of this. For instance, someone wantstheir online friends to know they’re feeling particularly ill, sothey “overshare” about their diagnosis, posting gritty detailsin hopes they offer catharsis, understanding or both. Uponreading these posts, some might feel sympathy and reach out,whereas others might feel uncomfortable and pull away. Andwhen this type of information is repeatedly shared, somemight begin to view the poster of these messages in a differ-ent, sometimes undesirable and awkward light. Whether sucha response is fair is beside the point, but knowing that negative perception is a possibility is helpful when usingsocial media.
By Meredith Whitmore
32 IG Living | December-January 2017 | IGLiving.com
Benefits of Social MediaLike all forms of technology, social media is neutral: It can be
used for healthy and unhealthy purposes. The good news is thatsocial media has proved helpful to many chronically ill patients. Health forums such as Inspire and PatientsLikeMe can be
especially helpful because they allow patients and healthcareproviders to share important information such as news relatingto clinical research and drugs. They can also help patients formcaring friendships with those who understand a particularcondition, often providing encouragement, personal accounta-bility regarding treatment, treatment tips and inspiration.According to one Inspire user, “The health community I’m partof helps because I am understood — the struggles, the pains, themysteries, the hard road to getting appropriate medical care andtreatment, the disappointments and despair, and the quirkytriumphs. I love sharing the triumphs, some of which wouldbe meaningless to others. I also feel useful when I can supportand offer assistance in any way to my fellows, and that is veryimportant to my self-esteem.”Social media can even help patients find the best doctors and
promote advocacy among those with chronic illness. Peopleunderstand the importance of social media communities. A2014 survey of PatientsLikeMe users revealed a majority ofmembers were willing to share their health information if it helpsothers patients or even advances treatment and helps doctors toknow more about an illness.3
Pitfalls to Navigate as a PatientBut there are risks and challenges with social media usage for
patients. In forums, for example, it can be difficult to find accurate
information. Unless there is an active moderator who checksfacts, what is shared is often “folk wisdom.” “The Internet is fullof anecdotal data, not systematic information,” explainsPortland, Ore., psychologist Joseph Rhinewine, PhD. “Whenyou go into a forum or other online group and ask, ‘Whatmedication should I use to treat my fibromyalgia?’ you’re goingto get people’s opinions. That means nothing for you. A study ofone is scientifically untenable.”There’s also the risk of “oversharing” about life or a condition.
Craving attention and seeking affirmation from outside sources iscommon; patients want to let others know they’re struggling inhopes of finding help and relief. Emotional relief is often found inforums and online support groups that connect people with thesame disease. But, on sites where others may not understand abouta particular sickness, excessive sharing can be awkwardly perceived.
Patients must determine their own motivations for postingabout their condition. That might seem subjective, but there arequestions they should ask themselves before publishing theirthoughts for the world. First, are they using social media toofrequently? “If you believe you’re using it in excess, then youprobably are,” says Dr. Rhinewine. It’s important to understand,he adds, that excessive social media usage can cause depressionrather than provide comfort.4
To determine whether social media usage is excessive ordetrimental in other ways, Dr. Rhinewine says the next thing tolook at are values: “What do you want your life to have beenabout after the 100 years are over? Check whether or not yourbehavior is lined up for that. If it isn’t, look at where it’s reallyincongruous and see if it would be worth realigning [with yourgoals and hopes] even if that’s very uncomfortable for you.”
“With chronic illness, one of the things that are corrosiveabout social media is the fact we often begin to identify with ourdisorder,” explains Dr. Rhinewine. “And that can become acentral aspect of people starting to squeeze out what is terrificallymeaningful in their lives as it becomes less and less central intheir self-definition.” Online forums, he says, are helpful inmany ways, but they can also strengthen the tendency toover-identify with an illness. Therapists can help patients totransform that energy into something more meaningful andpositive such as a hobby, friendships or even education.
Tips for Caregivers and FriendsWhat healthy social media usage looks like is highly subjective,
and what patients deem is healthy may look unhealthy to others.While only patients can fully understand their motivations, their
33IG Living | December-January 2017 | IGLiving.com
For chronically ill people and their friendsand family, social media
sites can become the canvas upon which theiremotional and physical
health is publicly displayed.
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Eligible patients on a prescribed Shire Ig product with commercial insurance can save up to a total of $5,000 within a 12-month period on their deductible, co-payment, or co-insurance for medication costs with MyIgCoPayCard. This program provides financial support for all Shire Ig products regardless of household income. Patients are eligible for a maximum benefit of $5,000 in total Shire support within a 12-month period to:
• Help ensure that patients with PI have access to Shire Ig treatment • Lessen the burden of out-of-pocket expenses for Shire Ig treatment
* Not valid for prescriptions reimbursed, in whole or in part, by Medicaid, Medicare, Medigap, VA, DoD, TRICARE or any other federal or state healthcare programs, including state pharmaceutical assistance programs, and where prohibited by the health insurance provider or by law. Commercial insurance must cover medication costs for prescribed Shire Immune Globulin (Ig) treatment for primary immunodeficiency (PI) and allow for copay or co-insurance assistance. Shire reserves the right to change or discontinue this program at any time without notice. Please see full treatment-specific Terms and Conditions on product web sites for additional program restrictions and eligibility requirements or call MyIgSource for more information (855-250-5111).
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PATIENT BRIEF SUMMARY of Prescribing Information HYQVIA [Immune Globulin Infusion 10% (Human) with Recombinant Human Hyaluronidase]
The following summarizes important information about HYQVIA (pronounced Hi-Q-via). Please read it carefully before using this medicine. This information does not take the place of talking with your healthcare professional.
What is HYQVIA?
• HYQVIA is a liquid medicine containing immune globulin and Recombinant Human Hyaluronidase. HYQVIA contains IgG antibodies, collected from human plasma donated by healthy people. The antibodies help your body to fight off bacterial and viral infections. The hyaluronidase part of HYQVIA helps more of the immune globulin get absorbed into the body to fight infection.
• HYQVIA is indicated for the treatment of Primary Immunodeficiency (PI) involving the humoral immune system in adults.
• Safety and efficacy of chronic use of recombinant human hyaluronidase in HYQVIA have not been established in conditions other than PI.
• HYQVIA is for subcutaneous use only.
What is the most important information that I should know about HYQVIA?
• HYQVIA can cause blood clots.
• Call your healthcare professional if you have pain, swelling, warmth, redness, or a lump in your legs or arms, other than at the infusion site(s), unexplained shortness of breath, chest pain or discomfort that worsens on deep breathing, unexplained rapid pulse, numbness or weakness on one side of the body.
• Your healthcare professional may perform blood tests regularly to check your IgG level.
• With your consent, your healthcare professional may provide blood samples to Shire to test for antibodies that may form against the hyaluronidase part of HYQVIA.
• Do not infuse HYQVIA into or around an infected or red swollen area because it can cause infection to spread.
• Talk to your healthcare professional if you become pregnant. Women who become pregnant during HYQVIA treatment are encouraged to enroll in the HYQVIA Pregnancy Registry by calling Medical Information at 1-866-424-6724.
Who should not take HYQVIA?
Do not take HYQVIA if you:
• Are allergic to IgG, hyaluronidase, other blood products, or any ingredient in HYQVIA.
• Have IgA deficiency with antibodies to IgA.
What are the possible or reasonably likely side effects of HYQVIA?
• After HYQVIA infusion a temporary, soft swelling may occur around the infusion site, which may last 1 to 3 days, due to the volume of fluid infused.
• The following local reactions may occur at the site of infusion and generally go away in a few hours. Local reactions are less likely after the first few infusions: mild or moderate pain, redness, swelling, and itching.
• The most common side effects of HYQVIA are headache, fatigue, nausea, fever, and vomiting.
• Antibodies to the hyaluronidase component of HYQVIA were formed in some patients taking HYQVIA. It is not known if there is any long term effect. In theory, these antibodies could react with your body’s own PH20. PH20 is present in the male reproductive tract. So far, these antibodies have not been associated with increased or new side-effects.
Call your healthcare professional or go to your emergency department right away if you get:
• Hives, swelling in the mouth or throat, itching, trouble breathing, wheezing, fainting or dizziness. These could be signs of a serious allergic reaction.
• Bad headache with nausea, vomiting, stiff neck, fever, and sensitivity to light. These could be signs of swelling in your brain.
• Reduced urination, sudden weight gain, or swelling in your legs. These could be signs of a kidney problem.
• Pain, swelling, warmth, redness, or a lump in your legs or arms, other than at the infusion site(s). These could be signs of a blood clot.
• Brown or red urine, fast heart rate, yellow skin or eyes. These could be signs of a liver or blood problem.
• Chest pain or trouble breathing, blue lips or extremities. These could be signs of a lung problem.
These are not all of the possible side effects for HYQVIA. You can ask your healthcare professional for information that is provided to healthcare professionals. Talk to your healthcare professional about any side effects that bother you or that don’t go away.
What should I tell my healthcare professional before I start using HYQVIA?
Before starting HYQVIA, tell your healthcare professional if you:
• Have or had any kidney, liver, or heart problems or history of blood clots because HYQVIA can make these problems worse.
• Have IgA deficiency or a history of severe allergic reactions to IgG or other blood products.
• Are pregnant, trying to become pregnant or are breast feeding.
How should I take HYQVIA?
• HYQVIA is infused under the skin (subcutaneously) up to once every 4 weeks.
• You can get HYQVIA at your healthcare professional’s office, clinic, or hospital.
• You can use HYQVIA at home. You and your healthcare professional will decide if home self-infusion is right for you.
You are encouraged to report suspected side effects by contacting FDA at 1-800-FDA-1088 or www.fda.gov/medwatch or Shire at 1-800-999-1785.
The information provided here is not comprehensive. To learn more, talk about HYQVIA with your healthcare provider or pharmacist. The FDA-approved product labeling can be found at www.HYQVIA.com or by calling 1-800-423-2090.
39IG Living | December-January 2017 | IGLiving.com
perspectives can become skewed. Even so, caregivers and friendsneed to be careful about giving advice. “Many believe that whenyou don’t know [what else to say], just give your opinion,” saysDr. Rhinewine. “That’s what many psychologists are doing acrossmy field, and I think it’s really harming the public. I don’t want tocontribute to the ‘this is what you should do’ mentality. People’sthoughts don’t work the way you think they will, and they oftendon’t respond to what common sense would seem to dictate.” To illustrate, Dr. Rhinewine says, “If a caregiver or friend were
to see that a patient seems to be identifying excessively with theirillness through social media, the worst instinct a caregiver orfriend could have would be to say something like, ‘Hey, maybeyou shouldn’t talk about it so much.’ That could be profoundlyinvalidating for a patient. The caregiver and friend don’t knowwhat function [social media] is serving for the chronically illperson. That could be the very best thing for them right nowand exactly what they should be doing.” In situations in which acaregiver or friend knows the patient really well, he says it’spossible to diplomatically say, “Hey, I think you might want toback off of this.” But, in most instances, “offering concreteadvice is almost invariably perilous.” Acting as a sounding board, rather than a black-and-white
advice-giver, can be much more beneficial. “It may be that if youknow the patient well, you could gently encourage them to see aqualified therapist,” Dr. Rhinewine says. “Sometimes that kindof advice or gentle nudging is welcome. Even if it’s unwelcome,the person might reluctantly go with it and still benefit.”Kathleen Franco, MD, a psychiatrist at the Cleveland Clinic,
shares many of Dr. Rhinewine’s thoughts, but her instruction forfriends, family and caregivers is perhaps a bit more prescriptivefor helping a chronically ill person to stop oversharing on socialmedia: “If you believe that someone is seeing primarily the illnessin themselves, and not their other good qualities, then help themto see themselves outside of that light.” There are many ways todo this, Dr. Franco explains, one of which is to ask: “Would theygo out to do something with you?” This could be taking a walktogether, volunteering at a charity, working with animals, takinga class — anything that could help the person stretch theirperspective on themselves and their situation.Dr. Franco also stresses to friends and caregivers that a patient
who seems to misuse social media is often driving people awayunintentionally, without understanding what’s happening. “Thepatient becomes a martyr, and they intensify their efforts toinappropriately reach out because it’s all they’ve known,” sheexplains. “At some point, reaching out in that manner hasbrought them closer to people, but they must learn to develop
another focus and plan for relationships. They have only a planA, so to speak, and they need to learn things about themselvesthat they and others will appreciate.”
Weighing the Benefits vs. the PitfallsSocial media sites can offer many benefits for patients,
including a place to connect with others with the same disease,as well as to share information about lifestyle and treatments.But, patients must also be cautious about what they post
and how their postings affect them and others. Before postinganything on social media, patients should ask themselves a fewquestions. Is what they are saying kind, true and valuable toothers? Would they say it face to face? Could what they areexpressing be selfish in some way? Is social media actuallyincreasing their frustration by enabling or encouraging themto vent? What is posted online stays online in some form foryears. Are they posting things they won’t be embarrassedabout next summer — or two decades from now? Will theyregret saying it?No one can provide patients and caregivers absolute answers
about appropriate use of social media. But, with careful thought andgentle guidance, it’s possible to reap more benefit than harm.
MEREDITH WHITMORE is an English professor and freelance journalistin the Northwest.
References1. Pew Research Center. Social Media Use Over Time. Accessed at www.pewinternet.org/data-trend/social-media/social-media-use-all-users.
2. Jabr, F. The Reading Brain in the Digital Age: The Science of Paper versus Screens. Scientific American, April 11, 2013.Accessed at www.scientificamerican.com/article/reading-paper-screens.
3. PatientsLikeMe Survey Shows Vast Majority of People With Health Conditions Are Willing To Share Their HealthData. Patients Like Me Newsroom, Jan. 23, 2014. Accessed at news.patientslikeme.com/press-release/patients-likeme-survey-shows-vast-majority-people-health-conditions-are-willing-share-t.
3. Chowdhry, A. Research Links Heavy Facebook and Social Media Usage to Depression. Forbes, April 30, 2016.Accessed at www.forbes.com/sites/amitchowdhry/2016/04/30/study-links-heavy-facebook-and-social-media-usage-to-depression/#515df7167e4b.
