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The Invisibility of Pain

Ankylosing spondylitis is a type of arthritis that is characterized by inflammation in the spine and nearby joints. This causes swelling, pain, and stiffness in the back and hips. Although AS can be different for different people, one of the most common symptoms is chronic pain.

Many AS patients can manage their pain using over-the-counter medicines or prescription pain medications plus physical therapy and exercise. Some people, however, experience “breakthrough pain” that cannot be fully controlled by medication. If this happens to you, it is important to see your health team, so you can find ways to control the pain as fully as possible.3

The invisibility of chronic pain

One of the main characteristics of pain is that it is not outwardly visible, like a broken bone or injury. Because of this, it is possible for people in severe or chronic pain to live their day-to-day lives without anyone else realizing it.

The stigma of chronic pain

Feeling chronic pain is physically uncomfortable at the best of times and debilitating at the worst. It may also be emotionally challenging, leading to depression and anxiety for many. Research shows that pain can also come with the additional challenge of stigma. This stigma originates from many sources:

  • The tendency of people in pain to withdraw from social activities, so they may be perceived as weak or less capable
  • The decline of empathy during medical training, so doctors may doubt your reports of pain or discount their significance
  • The association of people seeking pain relief with the serious abuse of opioid medications in our society

The challenges of stigma

People in chronic pain report being viewed as weak or disappointing by others, and they often feel an internal sense of shame or guilt. They are not always believed or taken seriously by their healthcare providers. And they are sometimes assumed to be seeking illegal drugs to feed an illegal habit rather than managing actual pain.5

Coping with chronic pain and stigma

Managing chronic pain and the stigma that may come with it can be a difficult process. Some of the following strategies may help you cope and find some relief:

  • Shed your guilt.
    It’s not your fault that you feel pain or have trouble moving. Try to accept things as they are and make accommodations for yourself rather than trying to live up to an image you had in your mind.6
  • Find supporters.
    Not everyone will question your pain or judge you. Seek out people who understand what you are going through. Sometimes friends will come through for you. If not, consider finding a local or online support group.
  • Accept some pain.
    Try to accept that you will feel some pain rather than fighting against it. This will help the pain fade slightly into the background of your attention. Remember, pain is difficult, not dangerous. Focusing on this may help you reduce the emotional distress of your pain.
  • Set small goals.
    Operate smarter, not faster. Set small goals that you can achieve today, so you can feel a sense of accomplishment. Focus on doing and being active, so you feel more in control and capable.7
  • Be kind to yourself.
    Treat yourself as kindly as you would your best friend. Many of us have a tendency to be hard on ourselves, but being ill is not your fault, and coping requires kindness and understanding. Try to mark at least one achievement each day, to celebrate yourself.7
  • Choose your provider.
    If you feel as though your healthcare provider is not listening to you about your pain, try to find someone who does, if you have options.
  • Increase your positives.
    Try to increase the things that make you feel good. When you feel depressed or low, you feel pain more intensely. Staying as active as possible and increasing the positive elements in your life will make you feel better and more uplifted as well as helping your pain recede.7

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.

Most Common Symptoms. Spondylitis Association of America. Available at: https://www.spondylitis.org/Ankylosing-Spondylitis/Symptoms Accessed April 5, 2019. Ankylosing spondylitis. Mayo Clinic. Updated March 7, 2018. Available at https://www.mayoclinic.org/diseases-conditions/ankylosing-spondylitis/symptoms-causes/syc-20354808 Accessed April 5, 2019. Pain in Spondylitis. Spondylitis Association of America. Available at: https://www.spondylitis.org/Pain-in-Spondylitis Accessed April 5, 2019. Approaching pain. Government of Western Australia Department of Health. Available at: https://painhealth.csse.uwa.edu.au/pain-module/approaching-pain/ Accessed April 5, 2019. Carr DB. Patients with pain need less stigma, not more. Pain Medicine. 1 Aug 2016; 17(8), 1391-1393. Available from: https://academic.oup.com/painmedicine/article/17/8/1391/2223343. Accessed April 14, 2019. Toni Bernhard. The Challenges of Living with Invisible Pain or Illness. Psychology Today. September 28, 2011. Available from: https://www.psychologytoday.com/us/blog/turning-straw-gold/201109/the-challenges-living-invisible-pain-or-illness. Accessed April 14, 2019. Approaching pain. Government of Western Australia Department of Health. Available at: https://painhealth.csse.uwa.edu.au/pain-module/approaching-pain/. Accessed April 5, 2019.

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