I recently attended a talk given by Ron Coleman, from the Hearing Voices Network, an organization that is run by users, in a self-help capacity, for people who experience auditory hallucinations. This group teaches that people should explore, engage, and in some cases, negotiate with the voices they hear, as opposed to only utilizing the medical route which is to deny the voices, or to label them as delusions, and to go the drug-based route which can add damaging side-effects to a person’s life. While I listened to Coleman talk about his own experience as a person with Schizophrenia who went from living in an institution to getting involved with Hearing Voices, and now being a husband, father, and speaker who travels the world, several things really resonated with my experience as a person with disability and chronic pain. This is the second of two blogs that will explore comments made by Ron Coleman and how they really resonated with me, and, I believe, will resonate with many others who live with chronic pain and disability.
Ron Coleman lived in an institution for years. Then one day, one of his support workers suggested that he attend a meeting for the Hearing Voices Network. He was resistant at first, but following some negotiations, he agreed to attend. When he arrived at the meeting a man came up to him and asked “do you hear voices?”, Coleman answered “yes”, and what the man said next forever changed the direction of Ron’s life; he said “the voices are real”. This statement lifted a weight off Ron; this acknowledgement that the voices he experienced were real, and not delusions to be ignored, denied, or medicated into oblivion, was life changing. The impact of that simple statement really resonated with me. I ran a chronic pain support group for six years, and there was not one person who attended our meetings who hadn’t been told by someone in their life that their pain was not real, that is was imagined, made-up, or exaggerated. Then they attended one of our meetings, and they were believed, and you could see a weight being lifted by the acknowledgement of the reality of their experience.
It can be very lonely having chronic pain. Only you truly know what your body is feeling. You can do your best to explain that pain to loved ones and medical professionals, but they don’t feel it, it isn’t as real to them as it is to you. This is especially the case when there is no accompanying visual sign of something being wrong. There is doubt, on their part, that the pain is real, or as bad as a person is saying. That doubt can be very damaging to the person with chronic pain, as they know what they are feeling but they don’t know how to get others to understand.
For many people with chronic pain it takes years before a diagnosis is discovered. I, personally, did the doctor/specialist dance for six years before being given a diagnosis. During these years, people with chronic pain are constantly questioned, doubted, and told it is all in their head. They encounter medical professionals who can’t figure out the pain, so place the blame on the patient instead of admitting that they just don’t know what is happening, or how to help the patient. The person with chronic pain begins to wonder if it is all in their head, they begin to doubt their own pain. They begin to doubt their own perspective, their own experience. Chronic pain is complex. It does involve emotional and psychological components. How could it not? When one has chronic pain, one’s life is turned upside down. Many have to leave work, school, quit hobbies, sports, and change the way they do everything in their life. Chronic pain affects relationships, interactions, productivity, and most of all, a sense of self. There is no denying that people with chronic pain deal with more than just pain. But that does not mean that their pain is any less real.
Unfortunately there are people who pretend to have chronic pain, who exaggerate their pain, or who use pain as a way to gain attention and sympathy, but, like so many things in life, that group is a tiny fraction, like 5%, of the overall group. It does not represent everyone with chronic pain, and yet so often it is the stick by which others with chronic pain are measured. It can become quite difficult to remain steadfast in one’s own perception of their pain when faced with this kind of constant doubt and cynicism. So when someone with chronic pain, who is used to doubt, negativity, and people thinking it is all imagined, is asked “do you have chronic pain”, and they answer “yes”, and they are told “your pain is real”, they, like Ron Coleman, feel a weight being lifted. They are relieved that they are believed. They can be overwhelmed with emotions, because their pain is so very real to them, but often denied by others. This acknowledgement can give a person with chronic pain the strength to continue forward, fighting for a diagnosis and/or treatment, secure in knowing they are believed by someone. Hearing, from another, that their pain is real, also demonstrates that they are not alone. Like those who hear voices, people with chronic pain can easily become isolated, feeling as if they are the only person who is experiencing this. But that is not true. Just as those who hear voices are not alone, neither are those who have chronic pain. And just as those who hear voices should not deny the voices, those with chronic pain should not deny their pain. They should also not let others dictate what one feels. If you have chronic pain it is real to you, and therefore your pain is real.