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 programs@spondylitis.org!

Our Twitter Community:

People can be cruel to people that have diseases that they cannot “see” or don’t know anything about. #AnkylosingSpondylitis
~@Divinitee2
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.
~@DerWechsel
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.
~@MHoganAuthor
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.
~@CoachJenR
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.
~@GailMolloyPT
I learned that I am no longer a morning person. Mornings suck due to pain and stiffness lasting 2-3 hours.
~@bergeron_ted
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!
~@youravgchic
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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