The Invisibility and Stigma of Chronic Pain
Pain is sometimes called an “invisible” symptom. Unlike a broken arm in a cast or a bleeding wound, pain often cannot be seen. Because of this, it is possible for a person to live their life day-to-day in severe pain without anyone else realizing it. Many who live with sickle cell disease also live with daily pain.
The stigma of chronic pain
Pain is a symptom that can carry a fair amount of stigma. This leads some people to avoid telling others they are in pain.
Pain is also often misunderstood. These misunderstandings may lead to stereotypes or assumptions being cast onto the person battling chronic pain. Judgment can come from friends, family members, employers, or even healthcare workers.1,2
What does chronic pain stigma look like?
In some cases, the stigma around chronic pain may take the form of being labeled as weak or as a complainer. In other cases, judgment may be made that someone in pain is lying about how bad their pain really is to get attention or time off from work. Sometimes, especially in our current opioid-crisis era, this stigma may come in the form of being labeled as a drug-seeker who is in little or no pain at all and just wants to fuel an addiction.
In many instances, there can be multiple layers of stigma happening all at once. Navigating this lack of belief and support can be challenging and isolating for those with chronic pain.1,2
How to cope with the stigma and invisibility of sickle cell pain
Coping with an invisible ailment and the stigma that often accompanies it can be a long-term and difficult process. Management of invisible symptoms or conditions, including chronic pain, might be improved by some of the following steps:
- Find those who provide positive support. Although there are some people who purposefully judge someone who says they are in pain, there are many others who do not. It may be a challenge to determine who the unconditional supporters are in your life, but they are out there. If you are finding that no one in your environment is providing you with the support you need and deserve, consider finding a support group in your area or an online community of people who are in a similar situation as you. Being surrounded by others who understand first-hand what you are going through may provide the boost you need to keep moving forward.
- Trust your body and mind. Do not forget that the pain you are feeling and perceiving is valid. If your body and mind are telling you that something is wrong or that you are in pain, trust those signals. Even if others question if what you are feeling is really present or as serious as you think it is, trust yourself and your personal experiences. You know your body best.
- Participate in things that make you happy. Stigma and pain can both take a toll on mental, emotional, and physical health. Finding hobbies or activities that bring joy may help ward off the negative impacts of living with chronic pain. Activities do not have to be strenuous or physical and can instead be watching a favorite movie or playing a game.3
- Partner with the right healthcare provider. At some point during your battle with chronic pain, you may find yourself in the care of a doctor who is not providing you with the support and consideration you deserve. If you feel you have a provider who does not make you or your experiences feel valued, it may be a good idea to get a second opinion or a new doctor, if possible.
Do you consider yourself an advocate for sickle cell?