Do you ever feel isolated with AS?

115 views
6 times supported
7 comments

GloriaG

31/03/2019 at 06:22

Good advisor

GloriaG

Last activity on 28/02/2023 at 00:50

Joined in 2018

107 comments posted | 47 in the Living with ankylosing spondylitis group

4 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Messenger
Committed
Explorer
Friend

View profileView Add a friendAdd Write

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. ??

All comments

JosephineO

Community manager

02/04/2019 at 11:45

Good advisor

JosephineO

Community manager

Last activity on 15/07/2024 at 09:21

Joined in 2018

989 comments posted | 32 in the Living with ankylosing spondylitis group

6 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Committed
Explorer
Evaluator
Friend

View profileView Add a friendAdd Write

@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?

@Sheilah‍ @Arjunsingh‍ @Bigpad‍ @Vanessas‍ @Sunique‍ @Omcneill13‍ @manuella26‍ @Scouserdog‍ @Paulphi‍ @MummaT‍ @neighbour‍ @Scuttboy1‍ @MartinOD‍ @twenty1guns‍ @Indiana‍ @Pinkbutterfly‍ @Paulaj276‍ @MagnoliaHaze‍ @Peter1982‍ @Crackaig‍ @Kevin24‍ @Benjam23‍ @tazzab‍ @Daisyduker‍ @sandynige‍ @cooperman‍ @findogask‍ @cmtspt‍ @Dinky50‍ @madpete‍ @Wisewords1603‍ @Kellcorsa‍

See the signature

Josephine, Community Manager

Do you ever feel isolated with AS? https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/isolation-2781 2019-04-02 11:45:41

Unregistered member

02/04/2019 at 11:48

@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.

Do you ever feel isolated with AS? https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/isolation-2781 2019-04-02 11:48:36

Unregistered member

11/04/2019 at 10:21

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

Do you ever feel isolated with AS? https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/isolation-2781 2019-04-11 10:21:21

GloriaG

12/04/2019 at 05:59

Good advisor

GloriaG

Last activity on 28/02/2023 at 00:50

Joined in 2018

107 comments posted | 47 in the Living with ankylosing spondylitis group

4 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Messenger
Committed
Explorer
Friend

View profileView Add a friendAdd Write

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.

Do you ever feel isolated with AS? https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/isolation-2781 2019-04-12 05:59:52

Kevin24

12/04/2019 at 14:51

Good advisor

Kevin24

Last activity on 27/05/2025 at 20:44

Joined in 2015

3 comments posted | 1 in the Living with ankylosing spondylitis group

Rewards

Good Advisor
Committed
Explorer

View profileView Add a friendAdd Write

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

See the signature

Kevin

Do you ever feel isolated with AS? https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/isolation-2781 2019-04-12 14:51:10

Courtney_J

Community manager

04/11/2020 at 12:30

Good advisor

Courtney_J

Community manager

Last activity on 13/10/2022 at 16:47

Joined in 2020

1,279 comments posted | 21 in the Living with ankylosing spondylitis group

11 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Messenger
Committed
Explorer
Evaluator

View profileView Add a friendAdd Write

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?
@Walgreens‍ @Mazzar‍ @Mandy43‍ @Thistlelass‍ @BatoutofHell‍ @Marmitesmum‍ @Moocher‍ @interested‍ @jkardine‍ @MPWOLRAC‍ @geronimo1‍ @davidfoy‍ @Peterem‍ @JackyQ‍ @ZANITOR‍ @tcmmcm‍ @Juliewulie1957‍

Feel free to share your thoughts and experiences here!

Take care,
Courtney

See the signature

Courtney_J, Community Manager, Carenity UK

Do you ever feel isolated with AS? https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/isolation-2781 2020-11-04 12:30:38

mrchipps

Ambassador

04/11/2020 at 19:57

Good advisor

mrchipps

Ambassador

Last activity on 13/06/2025 at 12:17

Joined in 2015

356 comments posted | 1 in the Living with ankylosing spondylitis group

38 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Messenger
Committed
Explorer
Evaluator

View profileView Add a friendAdd Write

When you have been on your own as long as I have. You feel very isolated and lonely

See the signature

singing poet man

Do you ever feel isolated with AS? https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/isolation-2781 2020-11-04 19:57:50

Do you ever feel isolated with AS?

All comments

Give your opinion

What do you think about the Carenity Forum and community?

How do you use Carenity? Share your experience!

Articles to discover...