SAA’s Helpful Hints: Community Wisdom – Perspectives Gained Through Battling Spondyloarthritis

By Spondylitis Association of America

Friday, May 17, 2019

Helpful Hints is a recurring feature, aimed at sharing our community’s knowledge and experiences. Living with spondyloarthritis can be difficult and challenging at times, however, throughout the process we can learn a lot about ourselves, our surroundings, and life in general. In this installment, we asked our online community, “If you have learned anything special about life or human nature as a result of spondyloarthritis, what is it?” We share a sample of responses with our thanks. We hope you find them thought provoking! Have your own to share? Email them to us at!

Our Twitter Community:

People can be cruel to people that have diseases that they cannot “see” or don’t know anything about. #AnkylosingSpondylitis
I learned it’s almost impossible to do things alone. Whether it’s getting medical coverage, working towards a goal, or even doing the personal things you can do to improve your mental and physical health, you need to bring people together in order to achieve it.
The strongest warriors often speak the least of their struggles. I applaud all the AS warriors out there. I see my hubby's struggle everyday. I know it is not easy to put on such a brave face all the time.
That it is human nature to mourn my old life, once denial starts to fade and I accept that my body will never be the same again. But I’d rather have this life than no life at all, so I’m grateful for every breath, however painful.
Resilience is the best asset. There are good days, even great days... but there are always bad days and worse days. Need resilience to get through it all.
I learned that I am no longer a morning person. Mornings suck due to pain and stiffness lasting 2-3 hours.
I’ve learned it sucks! Besides the great online #spoonie communities I’ve learned if you have a disease that doesn’t have cancer in the name there is no understanding, rarely any empathy or help, and family, doctors & government can be downright cruel when you suffer daily & need help & support the most!
Our Facebook Community: It taught me that I can still do anything I want to do, maybe not in a timely fashion but I can figure it out. It also taught me that sometimes people turn away and don't look back.
~ Leigh C.
I know myself better than I did before my diagnosis. I am aware of how I feel each day and adjust my plan accordingly. I am stronger than I thought I could ever be.
~Theresa S.
When someone is walking with a cane, something probably hurts.
~Jane M.
We are stronger than we think.
~Gwen O.
Over the years of living with AS, I've learned that I am much stronger than I ever gave myself credit for.
~Kellianne M.
I am strong, I am resilient. Pain and fatigue are things I feel sometimes, they do not define me.
~Amanda M.
AS is quite the motivator to improve yourself.
~Danny M.
I've learned to be content with my abilities, and not to feel bad about myself when I reach my limits. ~Robyn W.
It definitely humbled me. I was a very busy nursing assistant before AS got the best of me. Full of stress! I'll admit I was almost emotionless. It has given me my heart back if anything. ~Nancy P.
You may look good, but it takes away your smile and your soul. ~Aileen L.
Pain can be very harsh. ~Regina R.
Comparison is the thief of joy. ~Janine M.
It taught me to slow down, enjoy life in the moment. Give yourself a break on the bad days and work your ass off on the good days. I've gotten tough skin too. ~ Samantha P.
After 50 years of successfully fighting my disease, I have learned….In life, we are all dealt a set of cards. Some hands are better than others. Mine was not. I found it’s not about the quality of cards you are dealt, it’s about how good of a card player you are… I discovered I am an above average card player.
~ Walt Lichmira

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