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Expressing Pain
By Linda Lang

I get e-mails every day from patients complaining that no one—not their family, not their closest friend, not their doctor—can understand their pain. All of us living with RSD know that pain is our most constant companion, so we are left with a very large part of ourselves that we can't share with those around us. This can leave us feeling angry, resentful, and very alone.

It is not so much that our friends and loved ones are at fault, but that the English language has failed us. It has no way to express pain. Not only can't we say, "My pain is," we can never really know if the pain someone else feels is the same as what we are feeling. Sure, we can use words that describe it—burning, throbbing, sharp, dull, agonizing—but it doesn't really tell us what the "is," is. We are left with pre-language modalities, such as crying and screaming, to express what we are feeling. Crying and screaming hardly make for good conversation.

There are, of course, other experiences that we share for which there are no adequate words, love being the most common. But love is something we have all experienced and therefore it is something we can share. RSD, like love, is a life-changing experience. Poets, artists, and musicians immortalize love. When we first fall in love we believe our love is different from any love that has been felt before. We may not have the talent of the masters, but we still try to express our love in ways unique to us.

In a way, pain is like love. It causes us to experience feelings in a far deeper way and leaves us trying to express them in a way that shows their intensity and separates them from ordinary feelings. Since words are so inadequate, there are other ways to express our pain.

The intensity and depth of pain can uncover talents in us we never knew we had. Some, like Steve Spagnoli, have painted their pain. Larry Townes overcame both the pain and the disability of RSD and became an award-winning archer in the Para-Olympics. Some have turned their skills to writing; others have written songs. Some people find they can express their pain better by using it to help others and become involved in non-profit organizations, knit outfits for premature babies, or sew quilts for cancer patients. And a funny thing happens along the way—people often find their pain is not always as intense, they don't feel so alone, and they certainly do not feel useless. In helping themselves to express their pain, they have accomplished things that bring joy to others, as well as to themselves.

Not all of us will gain tremendous recognition for what we do, but that is not the point. Start very small. If writing helps you, then vent your anger on paper. By writing your feelings on paper first, it will be easier to express your emotions to others. If writing doesn't appeal to you, set up a dialogue with your pain. Talk to it about how it makes you feel, express to it your fears and frustrations. You may feel kind of silly at first, but it is a wonderful way to get to know yourself—and your pain - better. Who knows? Some of those conversations could be the basis for a poems or a song.

Crafts are another way to express yourself. If you can, take lessons so you can share the hobby with others. Painting, drawing, pottery- the list is endless. There is also something exciting about starting a new project. It could help give you a reason to get up in the morning.

None of this will make the pain go away, but it can help change our attitude towards it. Finding a constructive way to express your pain, a way that gives meaning to it, can help lessen the anger. It can help you escape from the hell, if only for a little while. And it can give you something to share with loved ones that they can understand.

RSDSA Review.

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