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21 Truths People With Chronic Spine Pain Want You to Know

September is Pain Awareness Month, and one of the most debilitating types of chronic pain is chronic spine pain. Klippel-Feil syndrome (KFS), is a rare condition that occurs when two or more of the seven vertebrae in the neck are fused together from birth, and can result in chronic spine pain. Some patients with mild iterations of KFS may never experience significant symptoms, while others may struggle with chronic pain and significant disability, requiring multiple surgeries and lifelong difficulties. The Klippel-Feil Syndrome Freedom advocacy organization is working to empower and unite patients and their families through peer support, education and research.

The Mighty teamed up with KFS Freedom and the The US Pain Foundation, the largest patient advocacy group in the country, to ask our Facebook communities, “What’s one thing you want others to know about chronic spine pain?” Their answers reflect the widespread physical and emotional effects of chronic spine pain, as well as their desire to not be judged for how they manage their daily lives with pain.

1. “I want others to know that people who have pain aren’t doing this for attention. We don’t want to complain, and we would do anything to make it go away. All we want is a life without pain.” — Melody F.

“I want others to know that people suffering from pain aren't doing this for attention. We don't want to complain and we would do anything to make the pain go away.”

2. “The pain is constant. Meds can keep it under control only to a certain point.” — Dee D.

3. “It’s a thief. It stole my life, my smile. It stole the wife, mother, sister and friend from all who love me.” — Susan L.

4. “Please know that not everyone who takes pain meds is an addict. I know I wouldn’t be here if I didn’t have my pain meds because it would be too much to handle.” — Michelle C.

5. “Even though I may be smiling on the outside, I am really crying on the inside. Why can’t there be an answer to my question at the doctors? I will continue to seek answers for my condition. I will not be embarrassed to do what I need to get though the day.” — Jackie F.

"I will continue to seek answers for my condition. I will not be embarrassed to do what I need to get though the day.”

6. “It never goes away. It feels like fire, and you are trapped in it.” — Marci W.

7. “Life with chronic spine pain is terrible when you are an extrovert and have to stay in the house all the time because of the excruciating pain. Family and friends start to be non-believers, and your social life now consist of doctor visits only.” — Idina M.

8. “I can’t get out like I used to. My pain is unpredictable.” — Joyce T.

9. “I have been fighting this for last 15 years. Pills always made my stomach ache. Now that I’m on medical marijuana, I’m finally getting some relief.” — Jesse F. Jr.

10. “It changes your life. It is not ‘just’ back pain or neck pain, it is the spine. The spine carries nerves which carry messages throughout the body. When damaged, it affects everything.” — Jeannette R.

"The spine carries nerves which carry messages throughout the body. When damaged, it affects everything.”

11. “It will show you how tough you actually are.” — Patricia A.

12. “I don’t want to get high. I just want to be able to get on the floor and play with my child. Those who need pain meds aren’t addicts.” — Jessica F.

13. “Everyone’s experience is different. Everyone feels and deals with pain differently. It doesn’t mean one of us is worse off; we just cope differently.” — Christine H.

14. “When I say I’m in pain because I have a birth defect in my spine, it’s not OK for you to complain about a muscle you once pulled.” — Emily H.

15. “Support of chronic spine pain means more than just medicine. It takes much more physical support and love and understanding.” — Alexander S. “Support of chronic spine pain means more than just medicine. It takes much more physical support and love and understanding.”

16. “Because of my son’s chronic pain, he has become depressed and suicidal. He tells me he can’t take the pain any more and just wants out.” — Debbie S.

17. “I wish more people and doctors were aware and educated about the full effects of spine pain.” — Kaci A.

18. “The struggle is real. You learn quickly that your spine affects more than you realize – from shoulder pain to hip pain to knee pain. Your body always feels older than it really is, and you never take a good night’s sleep for granted. Ever.” — Krystal B.

19. “Chronic pain does not mean we have a minimal tolerance for pain. We deal with debilitating pain every single day. Sometimes we can’t manage to avoid acknowledging the pain. Sometimes we can’t fake a smile or a joke to put you at ease. I’m not complaining, I’m just trying to live.” — Susan C.

20. “I will sometimes cry because of the pain, and I do not have a low pain tolerance. Sometimes my spine pain is worse than childbirth.” — Taija B.

21. “Please never stop seeking relief.” — Lori T.

"Please never stop seeking relief."

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