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Patients Ankylosing spondylitis
Do you ever feel isolated with AS?
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JosephineO
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JosephineO
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@GloriaG Hello Gloria,
Thank you for posting, it can be so difficult to explain your chronic illness to others, sometimes they just don't understand the daily and private battles that patients are suffering from. We wrote an article all about explaining your chronic illness to others, you can read it by clicking HERE.
Have any other members experienced or have any support to offer Gloria?
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Josephine, Community Manager
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@GloriaG I have an AWFUL time explaining my condition and how it impacts me everyday. sometimes I feel like they think that I am exaggerating and I find that beyond frustrating. What joy would I get out of pretending to be in pain? It is neither fun nor a hobby for me.
Don't worry, you aren't alone in this.
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Hi Gloria,
You're absolutely right about being frustrated and isolated, not only is it tough to explain what AS is and what it does, but OMG when you see people's faces glaze over half way through an explanation!!!
I sometimes feel I am headbutting a brick wall when I talk to my GP also, and don't even get me started on the benefits system sheesh!!!!
I'm with you Gloria, stay well x
GloriaG
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GloriaG
Last activity on 28/02/2023 at 00:50
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Thank you for your reply. My daughter is in University but comes home when she can mainly to study. I am screaming inside for her attention but she doesn't like interruptions when she is so busy. She is a wonderful person but her studies come first. My specialist has offered a nurse to come in daily but I can't afford that so I struggle on alone. She and I have lived with this for 9 years now so it has become normal for her to see me in pain. How can I reach her ? How can I explain how bad this really is. She doesn't get time to read this forum...I wish there was some way to tell her what is really happening to me. Hugs to everyone who is suffering and alone. You are hero's.
Kevin24
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Kevin24
Last activity on 13/09/2024 at 20:44
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Hi Gloria,
I've have suffered with AS most of my life finally diagnosed at 30 now 64 fully fused and have severe Kyphosis. I under stand what your saying people don't understand. I'm here if you ever need a chat.
Kevin
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Kevin
Courtney_J
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Courtney_J
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Hello everyone,
I hope you're doing well despite these difficult times. I thought I would revive this older discussion because feelings of isolation are such an important and unfortunately common accessory of chronic illness.
Have you ever felt isolated with you AS? Do you ever feel like others don't understand your illness or what it's like to live with a chronic illness? How do you cope with this? Is there a way to explain your illness to others which can help them to understand?
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Feel free to share your thoughts and experiences here!
Take care,
Courtney
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Courtney_J, Community Manager, Carenity UK
mr chipps
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mr chipps
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When you have been on your own as long as I have. You feel very isolated and lonely
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GloriaG
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GloriaG
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This is just my personal opinion but I am sure others could voice their concerns too...it must be so debilitating on top of the physical pain. Even though I am the owner/director of a clinic for the poor my staff seems to think I am OK and can go it alone, coz I have done for 8 years, nobody visits me coz they are too busy with "more serious" cases. With AS and in a wheelchair people tend to think it's just old age and cannot comprehend the other symptoms, the pain or the frustration and loneliness. If I called them they would probably come to visit but what can they do ? " Take your medication Mama, rest as much as you can Mama, watch a bit of TV Mama, we will drop in when we are not so busy Mama....!!! Why, I still have a very active brain and need conversation and some care. What do you all think. ??