Belonging…

Belonging, such a simple word for a huge concept.

A sense of belonging is a human need, just like the need for food and shelter. It refers to a human emotional need to connect with and be accepted by members of a group. It is centered on gaining acceptance, attention and support from others in a group as well as providing the same attention to other members.

Each and every one of us want to belong. 

We each have a deep desire to feel as if we fit in for who we are and what we stand for. But finding where we belong is sometimes like being that one difficult puzzle piece that just doesn’t seem to fit anywhere. You know it has its place, but where? This is especially true when you’re faced with a chronic illness. We struggle to find where we belong, as we may have felt we belonged somewhere else before our illness and no longer do.  Until we find a “tribe” of those who “get it” we may feel as if we don’t belong . The feeling of not belonging is lonely, heart-breaking, and painful.

Some of us choose find belonging through church, some with friends, some with family, and some with social media.  It can be with one or two people or a feeling of belonging with all of humanity.  Others find it difficult to find that sense of belonging, which can be lonely.

For those of us with chronic pain, it is more difficult for us to find where we fit in, but it isn’t impossible.

BelongingReach out to new people.  Talk to them.  Find out their story and if you’re comfortable, share yours. As I go on my journey with chronic pain, I am truly surprised at the sheer number of people out there that are battling daily with pain.  If you suffer with a chronic illness know that you belong, if nowhere else, to a wonderful, supportive world of people known as “spoonies”.  When I have needed the most support, those who truly understand have been there not to give me solutions, but rather to say, “Me too,” and “We get it.”

Until we find a “tribe” of those who “get it” we may feel as if we don’t belong.

I have found that my family, fellow spoonies, chronic illness warriors and those who are in the arena with me fighting the fight with me, and alongside me, are my tribe.

Have you found your “tribe”?

Who’s in your “tribe”?

As I was working on this post, I was looking through and reading different articles and I came across two that I thought would be worth your time to read about this topic of belonging and chronic pain.  I wanted to share them with you in addition to the post above.

  1. This article written by Maureen Pratt. It appears she also struggles with chronic pain and I wanted to share her article with you. (here) . Maureen feels that those of us with chronic pain, can start to feel more as if we belong if we start by communicating to others our limitations, whatever those limitations maybe. That way we are upfront and the limitations can be worked around and we can still be included. She goes on in the article and shares her own experience with this approach.
  2. This was a paper that was titled, Invisible Disabilities: Stigma and Belonging, A Research Paper Presented to The Faculty of the Adler Graduate School and it was written by Megan E. Shaw. It is a very well written paper that covers a lot of different topics and I encourage you to read the entire paper (here)  but I have included just the segment that was under the heading of “belonging”

Belonging

People who have disabilities and chronic conditions often have to adhere to a strict management of their lives. They may often worry about that piece of being discredited when someone else notices they have something wrong with them. This can cause difficulty in social relationships. This may be why some who suffer isolate themselves at times. There are INVISIBLE DISABILITIES: STIGMA AND BELONGING 30 psychological implications as well as physical ones. Depression may set in and the isolation can cause problems on many levels. It can hinder a person’s whole existence. They may have contact with people, but it is not a substantial type of contact. They are often missing the deep and meaningful relationships that human beings crave and need. When a person who has a disability tries to hide their disability they are still in search of a place to belong. They feel alienated and cut off from other groups. Even if they are fitting in with the ‘normal’ group of people, they still know they are different. They may not have that perfect place to fit. That perfect place where others truly understand the angst and pain that may be involved in having an invisible disability. This is where finding more types of support can be quite helpful. Going to a doctor may even be a source of anxiety for someone struggling with an invisible disability. Sometimes their healthcare provider may even think that they are malingering by trying to get some sort of secondary gain by pretending they have an issue. This judgment is very hurtful to the person suffering. “Those who fail to conform to those standards are not literally invisible, but they are marginalized; they are socially invisible” (Davis, 2005, p. 190). One area of research was based on an article called Invisible Doesn’t Mean it Isn’t There by Keith L. Swenk (2012). It was based on a man who has Multiple Sclerosis. He spoke about the numerous times that he would have to disclose his illness and how it brought a churn to his stomach each time he had to disclose. In his article Swenk (2012) explained the following: Just because we can’t see the need doesn’t mean it is not there. This article is for the student who can write page after page of beautiful prose but can’t add 2 + 2. This article INVISIBLE DISABILITIES: STIGMA AND BELONGING 31 is for the student who can memorize Pi to the 20th place but can’t tell time. This article is for the student who can name all the states and their capitals but can’t remember to bring their lunch to school or to hand in homework or permission slips. This article is for the student who can tell you wonderful stories but cannot put them down on paper. This article is for all of the students that suffer invisible disabilities (p. 5). The statement made above is quite intense. Everyone is touched and knows at least one person who has had to deal with an invisible disability. It can be a struggle for all who are involved, the disabled individual as well as the people who love them.

* I would recommend going and reading the entire article/paper.

Belonging, is such a huge topic and there are so many feelings that are entangled in this topic for me. To unravel that all is for another time. But from the perspective of chronic pain, belonging is being accepted for who you are and for what you stand for and that includes the acceptance and understanding of the condition in which one is battling. 

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