Written by Susan L. Schildt for the RSDSA blog.
I have been asked, as a sibling of an RSD Warrior, to share my thoughts and feelings on this wicked disease.
I am not good at sharing my feelings, but as I thought through this I thought that using the letters of the acronyms of this disease might be the way to go to describe what the disease does to the patient and family.
RSD – Letters that define a disease of Intense burning sensation.
Robber of quality of life for patients
Robber of quality family time due to suffering of patient
Robber of anticipated fun events, hopes, and dreams due to the burning sensation that cripples the individual and the family who stands by the individuals side helplessly standing by, at a loss to provide comfort physically or emotionally.
Sadness that is a part of watching all of the “robbery” described above and once more unable to provide real comfort in the face of anguish and despair.
Suffering that comes from watching the patient suffer and suffering inside because you cannot help. Suffering because you do not have anyone to talk to who understands and suffering from trying to hide your own feelings so as not to burden the patient anymore than they are already burdened by the disease.
Sadness from watching caregivers work so tirelessly to provide comfort in any small way and unable to do so then carrying their sorrow inside with no real outlet.
Deception is part of the disease because from the outside one often times appears to look healthy while a raging inferno burns inside thus creating isolation from friends/ family because they feel the patient is making unfounded excuses to not participate in events or activities. Isolation for both the patient and caregivers then ensues due to lack of understanding and helplessness of “outsiders.”
Devastation on the part of the patient and watching the patient miss long awaited, hoped for events/festivities because the pain is so excruciating to venture out.
While I am not right in the midst of all of the above because I live miles away, hearing the anguish in voices, devastation from crushed aspirations and tears of helplessness and frustration are sometimes more than I can bear as I, too, feel helpless to soothe, comfort, fix the situation for those I love.
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