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What Are Your Fears Surrounding Spondylitis And How Do You Cope With Them?

A MySpondylitisTeam Member asked a question 💭
USA

I just listened to another Autoimmune Besties podcast
They have such good food for thought and always leave me wondering what everyone here would say to the topics they bring up. So in that light, what are your fears surrounding spondylitis and how do you cope with them?
Episode 9:  Overcoming the Fears of Living with Autoimmunity

September 25, 2022
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Reactions

Answer Summary

Members opened up about their deepest fears surrounding spondylitis, with the most common being the loss of mobility and independence,... Read more

Members opened up about their deepest fears surrounding spondylitis, with the most common being the loss of mobility and independence, becoming wheelchair or bed-bound, and the guilt of not being able to fully care for their children or grandchildren due to unpredictable pain and fatigue. Several members shared powerful coping strategies, including taking life one day at a time, staying physically active through water therapy and Tai Chi, reframing negative thoughts into positive ones, leaning on faith and prayer, and finding gratitude in small moments of connection with loved ones. A recurring theme was the importance of refusing to surrender joy or hope to the disease, with members encouraging each other to keep moving, rest without shame, advocate for themselves with doctors, and remember that their struggles teach compassion and resilience to the next generation.

A MySpondylitisTeam Member

I fear loosing my range of motion. Movement is so important. So is, how you move. For me, the more fluid the better. Beginner's Thai Chi and stretching in a pool work for me. I believe if you stop moving that's it....you're done for. Always keep moving. Rest when you need to. It alliws you to heal and keep going. No shame in resting. Just don't stay there...lol.

October 9, 2022
A MySpondylitisTeam Member

After many years of living with spinal degeneration and inflammation, it seems to me that those of us who suffer from spinal issues have much in common and those who don't suffer from these things seem to be in another world. It's s almost as if we live on a different planet.
I am not belittling those who suffer from arthritis in other joints of the body. I have relatives and friends who have different types of arthritis but not in the spine. They suffer a lot from their conditions. I pray for them. Yet at the same time, spinal patients like us seem to be almost "other worldly." This is why I feel a special bond and kinship with the rest of you.
I have been a member of the Arthritis Foundation for many years and I encourage all of you to contact the Foundation to see what they have to offer.

Mark,
Indiana

September 17, 2023
A MySpondylitisTeam Member

My fears about my spinal arthritis and arthrosis are these: I don't know how much more degeneration I can take. The degeneration in my C-Spine is extreme and my neck could break at any time. Not having much info from medical care providers makes it worse. I live on a day to day basis. It feels like...

September 14, 2023
A MySpondylitisTeam Member

Gosh Mimi, sounds like your plate is full! I’m so sorry about the spouse. I stayed with mine a year after we should have parted and it was awful. I was so afraid I couldn’t support my kids, pay for everything alone. But God provided. Always. We didn’t have a lot but had enough. And the best part? I had peace in my home. I was taking care of my dad who had AS but we didn’t know. He also had dementia but could function, insisted on living alone. Mother had just passed away. We know God tests us. But he will provide for you also. Praying for you girl.

September 8, 2023
A MySpondylitisTeam Member

Love this point of view! Awesome! I do try to keep myself moving and fight on. I am afraid I have yet to figure out how to get my mom moving though. I won't give up!

October 26, 2022

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