I am writing today to continue the discussion I began at the end of yesterdays post concerning the complaints and negavitity of my Peers. I felt tired of always hearing the negative and not finding many who strived towards achieving the positive, despite constant pain. I have posted two links to abstract research above that validates that we are more negative in our lives. The research shows lack of interpersonal support, stigma, and that the tools used to assist other chronic illness don’t appear to work for us in improving attitude.
I agree with the studies. I do not find that the same tools used for other chronic illness work for me. For instance, those who suffer from diabetes are given help from nutrionists, effective medication if used correctly, and while it is invisible, it is accepted by society. Chronic pain and exhaustion does not have effective medication, we are not given tools such as nutritionists that help us to achieve better help, and our syndromes are not widely accepted even though these illnesses are both invisible. As a Peer with an invisible pain syndrome, I advocate on my blog for using tools that are beginning to be acknowledged by doctors; but we are “told” about these, we don’t get classes to learn the tools like those with diabetes.
There is stigma. It is difficult to know what to do with this; wear a badge, have a rally, I remain in the dark about how to contend with this. I am frustrated with the continued negativity, that lasts beyond the few years of grief stages for our lost “old” life, because I believe we all have the power to take back our power. One person at a time. One workplace at a time. One community at a time. The stigma is less than when I was diagnosed so many years ago. Our syndrome is accepted by the medical community, the ADA, and more.
It has been my experience that I had to work very hard at lifting myself up. I had a limited support system, most of my work was internal and alone. It is never easy but I wonder if being continually negative is assisting others in continuing the stigma? Or, am I completely off the mark and depression with chronic pain/exhaustion is linked, making us prone to negative thoughts? Perhaps this is so, but even in depression the hard work that people do lessens it.
I will leave these thoughts now. I would love to have feedback on this topic. Do you believe you can become more positive?