Twitter Chat: Navigating Relationships with Spondylitis

On February 25, 2020, SAA hosted our fourth Twitter chat. The chat focused on navigating relationships, communication challenges, maintaining healthy relationships and social connections, and above all – being kind to yourself, while living with a chronic illness. Our special guests on the chat were Clinical Social Workers for the Inflammatory Arthritis Support and Education Programs at New York’s Hospital for Special Surgery, Adena Batterman, LCSW (@AdenaLCSW), and Joan Westreich, LCSW-R.

The feedback and responses were encouraging and insightful. Below we share the content of our #spondychat with our community. It is organized by question and answers. Enjoy!

Note: Please email us at programs@spondylitis.org if you’d like to suggest discussion topics for future Twitter chats! We’d love to hear from you. And don’t forget to follow SAA on Twitter @spondylitis for updates on current news and events.

Q1: Intros! Please take a minute to say hi and introduce yourselves. Remember to use #SpondyChat #spondylitis

Question 1 2/25/2020 - Curated tweets by spondylitis

Q2: Many with #spondylitis struggle to explain to friends/family what they’re going through & how they’re feeling. What’s a good way to explain the challenges of living with SpA? How can they respond to accusations of being lazy, antisocial or a faker? #spondychat

Question 2 2/25/20 - Curated tweets by spondylitis

Q3: Holidays/family celebrations can be overwhelming for those with #spondylitis. Many find social events draining & stressful to attend, but go for fear of offending others. How can someone living with SpA walk the line between celebrating and caring for themselves? #spondychat

Question 3 2/25/2020 - Curated tweets by spondylitis

Q4: Sometimes, well-meaning family members or friends give unwanted or incorrect advice out of a desire to help. How can we respond to unwanted advice from a place of kindness while setting protective personal boundaries? #spondychat #spondylitis

Question 4 2/25/2020 - Curated tweets by spondylitis

Q5: Holiday celebrations and parties can be difficult for those with specific dietary needs. What are some approaches for people with dietary restrictions? How can they advocate for themselves and hopefully receive understanding and patience? #spondychat #spondylitis

Question 5 2/25/2020 - Curated tweets by spondylitis

Q6: How can a person with #spondylitis /other chronic illness ask for the support they need? #spondychat

Question 6 2/25/2020 - Curated tweets by spondylitis

Q7: Those living with #spondylitis can feel isolated or lonely if they can no longer participate in the same activities as their friends. What are some tips for maintaining friendships/social connections with a chronic, unpredictable disease like SpA? #spondychat

Question 7 2/25/2020 - Curated tweets by spondylitis

Q8: When someone with #spondylitis is feeling well, energetic & able it’s frustrating when loved ones say, “Stop, that will make you worse!” Those with SpA want to feel like they have value. How might they lessen a loved one’s fears & explain they can safely contribute #spondychat

Question 8 2/25/20 - Curated tweets by spondylitis

Q9: #spondylitis can change the dynamics of a romantic relationship if a partner becomes sick & in too much pain to function as before. What are some tips for telling your partner what you’re going through, especially if symptoms aren’t yet validated by a diagnosis? #spondychat

Question 9 2/25/20 - Curated tweets by spondylitis

Q10: During a flare, a person with #spondylitis may be irritable or depressed, lose perspective, or lack energy to communicate properly. What are some strategies for expressing what one is going through – either verbally or non-verbally – during a debilitating flare? #spondychat

Question 10 2/25/20 - Curated tweets by spondylitis

Q11: One of the most crucial relationships a person with #spondylitis maintains is with their doctor. The dynamics between physician & patient is complex. What are some communication tips for achieving trust, understanding & compassion with your doctors? #spondychat

Question 11 2/25/20 - Curated tweets by spondylitis

Q12: Last question! Talking/sharing one’s experiences with others facing similar challenges can be a plus for #spondylitis warrior. What are the benefits of joining a support group? How do in-person groups differ from online forums, what are strengths & drawbacks? #spondychat

Question 12 2/25/20 - Curated tweets by spondylitis

Concluding Remarks

Concluding Remarks 2/25/2 - Curated tweets by spondylitis

By: Spondylitis Association of America

Tags:

Relationships

Twitter Chat: Navigating Relationships with Spondylitis

Q1: Intros! Please take a minute to say hi and introduce yourselves. Remember to use #SpondyChat #spondylitis

Q2: Many with #spondylitis struggle to explain to friends/family what they’re going through & how they’re feeling. What’s a good way to explain the challenges of living with SpA? How can they respond to accusations of being lazy, antisocial or a faker? #spondychat

Q3: Holidays/family celebrations can be overwhelming for those with #spondylitis. Many find social events draining & stressful to attend, but go for fear of offending others. How can someone living with SpA walk the line between celebrating and caring for themselves? #spondychat

Q4: Sometimes, well-meaning family members or friends give unwanted or incorrect advice out of a desire to help. How can we respond to unwanted advice from a place of kindness while setting protective personal boundaries? #spondychat #spondylitis

Q5: Holiday celebrations and parties can be difficult for those with specific dietary needs. What are some approaches for people with dietary restrictions? How can they advocate for themselves and hopefully receive understanding and patience? #spondychat #spondylitis

Q6: How can a person with #spondylitis /other chronic illness ask for the support they need? #spondychat

Q7: Those living with #spondylitis can feel isolated or lonely if they can no longer participate in the same activities as their friends. What are some tips for maintaining friendships/social connections with a chronic, unpredictable disease like SpA? #spondychat

Q8: When someone with #spondylitis is feeling well, energetic & able it’s frustrating when loved ones say, “Stop, that will make you worse!” Those with SpA want to feel like they have value. How might they lessen a loved one’s fears & explain they can safely contribute #spondychat

Q9: #spondylitis can change the dynamics of a romantic relationship if a partner becomes sick & in too much pain to function as before. What are some tips for telling your partner what you’re going through, especially if symptoms aren’t yet validated by a diagnosis? #spondychat

Q10: During a flare, a person with #spondylitis may be irritable or depressed, lose perspective, or lack energy to communicate properly. What are some strategies for expressing what one is going through – either verbally or non-verbally – during a debilitating flare? #spondychat

Q11: One of the most crucial relationships a person with #spondylitis maintains is with their doctor. The dynamics between physician & patient is complex. What are some communication tips for achieving trust, understanding & compassion with your doctors? #spondychat

Q12: Last question! Talking/sharing one’s experiences with others facing similar challenges can be a plus for #spondylitis warrior. What are the benefits of joining a support group? How do in-person groups differ from online forums, what are strengths & drawbacks? #spondychat

Concluding Remarks

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