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Ankylosing spondylitis: how do you talk to your family about it?
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Courtney_J
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Courtney_J
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Hello @spond568, thank you for opening this discussion! ![]()
Hi everyone, how are you today?
Are you able to talk openly about your AS with your loved ones? Do they understand what you're going through? How do you talk to them about it? Have you ever had someone not believe you?
@Badbones @Cdionne1089 @Avro560 @Kerryross @Kanna3 @w2007sara @JayLynn @Tinamaria @jrobinjrob
Don't hesitate to share your experiences and advice here!
Take care,
Courtney
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Courtney_J, Community Manager, Carenity US
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sulo167
sulo167
Last activity on 04/01/2024 at 3:50 AM
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1 comment posted | 1 in the Ankylosing spondylitis Forum
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Good site! I really love how comfortable it is on my eyes. I'm wondering how I can be notified every time there's a new post. [This content has been moderated by an administrator]
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Badbones
Badbones
Last activity on 01/06/2022 at 2:48 PM
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5 comments posted | 2 in the Ankylosing spondylitis Forum
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For me, it is important not to hesitate to speak up. Your family must support you, it is essential for our recovery
cynicalgiddy
cynicalgiddy
Last activity on 03/08/2024 at 10:15 AM
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1 comment posted | 1 in the Ankylosing spondylitis Forum
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As for my own opinion, I am willing to tell my family my current situation about AS. Because only family is the place that loves, protects and protects us. Your family will take care of you through this difficult time. [This content has been moderated by an administrator for violating Carenity’s Terms of Use.]
orabelle
orabelle
Last activity on 05/16/2024 at 9:16 AM
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1 comment posted | 1 in the Ankylosing spondylitis Forum
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I think you should be frank with your family [This content has been moderated by an administrator]
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DejonMuller
DejonMuller
Last activity on 10/17/2024 at 12:04 PM
Joined in 2024
Family/friend of a patient with Adenine phosphoribosyltransferase deficiency since 2024
3 comments posted | 2 in the Ankylosing spondylitis Forum
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@orabelle THANKS YOU.
Edwinann
Edwinann
Last activity on 06/15/2025 at 11:06 AM
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Patient, Ankylosing spondylitis since 2025
Other condition: Aceruloplasminemia
1 comment posted | 1 in the Ankylosing spondylitis Forum
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@DejonMuller
Speaking up without hesitation is crucial, in my opinion. We can't get past this obstacle without the love and encouragement of your loved ones.
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LaurenChristison
LaurenChristison
Last activity on 05/08/2026 at 3:15 AM
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Patient, Ankylosing spondylitis since 2026
2 comments posted | 2 in the Ankylosing spondylitis Forum
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I completely understand the struggle. For years, my family dismissed my complaints as "just aches and pains" or "growing old." It was incredibly frustrating trying to explain the constant fatigue and stiffness, the way it impacted my daily life. Eventually, a clear diagnosis and some informative sessions with my rheumatologist helped them understand the reality of ankylosing spondylitis. Now, they're much more supportive, which makes a huge difference.
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zaczi99
zaczi99
Last activity on 03/17/2026 at 5:44 AM
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Family/friend of a patient with Ankylosing spondylitis since 2025
Other condition: Achromatopsia
3 comments posted | 3 in the Ankylosing spondylitis Forum
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Ankylosing spondylitis can be tough, especially when explaining it to loved ones. Break it down simply. Think of it like a puzzle where the pieces (your spine) want to stick together when they shouldn't. Communication is key!
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Niamhraham
Niamhraham
Last activity on 03/19/2026 at 7:19 AM
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Interested in Ankylosing spondylitis since 2026
1 comment posted | 1 in the Ankylosing spondylitis Forum
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It's tough when family doesn't fully understand. Sharing my experiences felt like an uphill battle at first. What helped was focusing on specific examples of how AS impacts me, not just the label. Be patient and keep communicating. [This content has been moderated by an administrator.] Hang in there.
Somya.P
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Somya.P
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Last activity on 05/07/2026 at 7:03 PM
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Hello everyone 🌟
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We’re checking back in on this discussion: Ankylosing spondylitis and talking to your family 💛💬
Explaining your condition to loved ones isn’t always easy, especially when symptoms are invisible or hard to describe 🤍
💬 How do you talk to your family about your condition? What has helped (or made it harder)? Do you have any tips to share? 🌿✨
Your experience could really help others feel understood and supported 🤝💛
Take care,
Somya from the Carenity team 🌼
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Somya from the Carenity team
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I am in the severe range now at 74 yrs old. I have found thru trial and error and getting older with SA, I sleep on my back because I can hardly turn to my side now. I also take 10 mg Melatonin. I didn't know it came in 20 mg! (Thanks ladyslipper 67) What has really help with my back pain, when in bed, is a large memory foam wedge. The large end is under my knees and my legs go down to the small end. It doesn't move when I sleep but then again I am not turning over back and forth. This takes the pressure off my back. I hope this helps someone.
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Unregistered member
I am in the severe range now at 74 yrs old. I have found thru trial and error and getting older with SA, I sleep on my back because I can hardly turn to my side now. I also take 10 mg Melatonin. I didn't know it came in 20 mg! (Thanks ladyslipper 67) What has really help with my back pain, when in bed, is a large memory foam wedge. The large end is under my knees and my legs go down to the small end. It doesn't move when I sleep but then again I am not turning over back and forth. This takes the pressure off my back. I hope this helps someone.
See the best comment
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spond568
spond568
Last activity on 01/05/2022 at 5:43 PM
Joined in 2021
10 comments posted | 10 in the Ankylosing spondylitis Forum
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Are you all able to talk to your family about your AS? Do they believe you? Do they support you? I need advice