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Patients Ankylosing spondylitis

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Member Carenity • Community manager
Posted on

Hello members, 

Please leave your comments based upon your experience with the diagnosis of ankylosing spondylitis on what were the top three most difficult things to accept and/or bear upon being diagnosed?

The goal of this discussion is to provide advice and help to members who have been recently diagnosed with AS on how to better understand the obstacles with being diagnosed in order to hopefully better accept and cope with the diagnosis.

Beginning of the discussion - 4/24/19

What are the top three most difficult things upon diagnosis?
Member Carenity
Posted on

Grocery shopping (I have started to use more and more the InstaCart App), attending social gatherings and events, and not allowing yourself to become consumed with fear/anger/questions of why me - this took a lot of work and still does.

What are the top three most difficult things upon diagnosis?
Member Carenity
Posted on

1. Knowing I can't do what I use to

2. Had to change careers to better fit my needs

3. Control my controllables and not worry about what I cant control.

Coping has been my biggest challenge.  I workout and eat right the best I can but I still feel pain and fatigue. That's just what it is. I'm 38 now and was diagnosed 6 years ago. Hopefully I can stay active for 20 more years.

What are the top three most difficult things upon diagnosis?
1

Member Carenity
Posted on

Hello,

I can list all the problems I have but I bet you already know about them.

I have had AS for 4 years now but when I look back on my life I noticed little signs that I did not know at the time was actually AS.  Everyone is a little different for one I am 53 years old and didn't realize that I had AS until I was 49.  Not to push spirituality on anyone but it has helped immensely with me.  Not religion, but if that helps then by all means, but spirituality.   Google it if you need clarity for like AS, spirituality can mean/be many different things.  Upon that I leave you with a little prayer I use when I just don't understand, or I'm having a bad day.

 Higher Power, grant me the serenity to accept the things I cannot change,                                                                          the courage to change the things I can,
and the wisdom to know the difference.
Living one day at a time,
enjoying one moment at a time;
accepting hardship as a pathway to peace;

Peace Arthur

What are the top three most difficult things upon diagnosis?
Member Carenity
Posted on

1. having to cancel plans or gatherings when feeling my worst. 

2. struggling to gain energy to run my business or get through the day.. the fatigue is a killer!

3. Dealing with the pain without taking harsh medicine and trying to find a balance of food, exercise etc and not being able to truly pinpoint exactly what is really helping