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AS “Insta” Stories

Hi there! My name is Anthony and I’m a team member here on AnkylosingSpondylitis.net. I have the honor of interacting with you on our site and social media accounts – Perhaps we’ve chatted before! One thing I’ve learned is that we have an incredible group of people in this community. You are all so supportive of each other no matter what stage of this “journey” you are in, no matter if you are having a good or bad day, and no matter if your experience is different from the next persons.

I want to share a few things back with you that you have shared with me. I think it is important for people to know they are not alone in this experience of living with AS, and seeing what others have gone through can help.

Here are a few questions I asked on Instagram with responses from people in our community. I hope this shows you the range of experiences of others living with AS. Please share some of your thoughts in the comments below or share your own story in the community story section.

Sending positive vibes to you all,
Anthony C.

Living with ankylosing spondylitis

For those who are not on Instagram, these are posts we made using the Instagram Stories feature which allows people to interact with us on a different platform!

In three words or less, how would you describe AS?

  • Unpredictable, frustrating, misunderstood
  • Isolating, exhausting, motivating
  • Living, yet dying
  • Random and painful
  • Pain in the ASs
  • Annoying, confusing, depressing
  • Opportunity for growth

Ankylosing Spondylitis described in three words annoying confusing misunderstood

How did your AS initially present itself?

  • Hip and chest pain
  • SI joint pain
  • SI joint pain that gradually worsened over 6 months until I couldn’t walk
  • Uveitis and neck pain
  • Muscle spasms and strains…constantly
  • Stiff and painful back, neck and hips
  • Fatigue and ankle pain
  • Lumbar pain, hip pain, planter fascilitis, and chest pain, in that order
  • Woke up one day and couldn’t walk
  • Tension headaches and back aches
  • Lower back pain

Ankylosing Spondylitis initially presented itself as SI joint pain uveitis and neck pain

Finish the sentence: Today I am caring for myself by…

  • Saying no!
  • Binging on Netflix and ice packs
  • Taking plenty of breaks
  • Stretching a lot!
  • Resting. Actually resting
  • Resheduling an appointment so I can manage fatigue
  • Giving my body the rest it deserves

today I am caring for myself by taking plenty of breaks and saying no

Have you had to change careers due to your AS?

  • Yes – 67%
  • No – 33%

67 percent of people have changed their career because of Ankylosing Spondylitis

Has anyone ever minimized your AS because they could not see it?

  • Yes – 97%
  • No – 3%

97 percent of people say that people have minimized their AS because they can not see it

Do you struggle with fatigue?

  • Yes – 95%
  • No – 5%

95 percent of people with ankylosing spondylitis struggle with fatigue

Have you experienced brain fog?

  • Yes – 97%
  • No – 3%

97 percent of people with ankylosing spondylitis experience brain fog

Has AS changed your sex life?

  • Yes – 89%
  • No – 11%
  • 89 percent of people say AS has affected their sex life

    Do you ever feel guilty for being sick?

    • Yes – 92%
    • No – 8%

    92 percent of people say they feel guilty for being sick

    Does it help to read stories from others living with AS

    • Yes – 98%
    • No – 2%

    98 percent of people with AS say it helps to hear other stories from people living with AS

    Will you share a story about your experience with ankylosing spondylitis? Click the button below and help others feel less alone!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AnkylosingSpondylitis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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