How do other patients with these long term and “invisible” pain cope? How does it feel like when most rheumatologists- the experts that we see, can’t be more tender with us because they cannot spot those tender spots (pardon the pun) ? And for people in countries which provides “disability benefits”, what kind of experience do they have to go through? In where I was, it took even real courage to “come out” with it (stigma could be even more than being gay or lesbian the rural areas of western societies). Another young, courageous and intelligent young lady I knew told of being ridiculed by her peers-university students in a well-known university. She received hate mails when her story appeared in the papers. Some really sick people actually told her to stop being a wimp and it was all in her heads. Some suspected that she was trying to gain sympathies. FYI, she comes from a country where there is no “benefits” for sick people, she was not asking for any donations and yet people thought that she would benefit from the sympathies.
All she asked for is more support (ie forming a support group) for young patients with chronic pains. Is that too much to ask for? In a world where fifty something women could demand the right to have a drug which the benefit and risks are not even clear and cost tens of thousand because they have a life (shown by colourful clothes and a makeover) and they want to live, is it too much for a young woman like her to hope that there is more awareness and support of the terrible conditions she had? The problem is she had no dramatic photos to show; she looked plump (side-effect of limited movements and the cocktail of drugs) and cheerful.
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