Pretty tough to realize you are not only not helping, but actually hurting your own loved ones and friends. Pain has a wide reach, and it needs to be stopped.
How much torture? How much before I sink beneath the surface and forget everything that I am? Over and over those nearby look to me for a response, even a validation. In my silence, they hear, not my pain, but a rejection of who they are. How much warmth do they expect from pain? They expect it all! How much distance do they think I can put between myself and pain? They expect a distance so great that they feel me as they would want me to be! Do they not realize how closely pain hugs you into its bitter bosom? Do they not see the merging? Don
January 28th, 2006 at 12:22 pm #Jill Cline
So as a person who loves someone in chronic pain, what’s the best things you can do?
Specifically. In real terms. J.Cline
cline@scnc.sps.k12.mi.us
Ed. Note. Painonline never gives medical advice, but always encourages you to see your doctor or health care professional. We give here a list emailed to us by someone with central pain, which we think has some value.
1. Accept what the person is saying, even if they have no words to describe it. Say to yourself I don’t understand what you are experiencing, but I am here to try to understand how it makes you feel
2. Get the best medical care available. This is difficult in an area where ignorance is so widespread. Pay no attention to “Normal” MRI or CT. Only a few centers are capable of imaging pain and you are unlikely to become part of one of the protocols where highly trained specialists utilize tensor imaging MRI, PET, or functional MRI to see pain. You learn nothing more than that the person is telling the truth.
3. Understand that no satisfactory treatment is available for Central pain. Don’t get caught up in a wild goose chase for the magic cure which does not exist. Watch the NIH notices on the internet. If there is a breakthrough, they will almost certainly be in on it.
4. Teach the pain sufferer to accept lowered expectations of life and to consider new criteria for what constitutes success in a day.
5. Shift to activities which the sufferer does enjoy. This may be music or fine art or something else. This can require great creativity on your part.
6. Don’t empty yourself out over their pain and your inability to help. A positive attitude is one of the best things you can give, but not an unrealistic one.
7. Avoid stress in the sufferer and in yourself. This means saying “NO” to many requests, and accepting that people don’t take pain seriously and will expect you and the individual to ignore it. They fail to realize it is a serious illness.
8. Attempt to get care at a university or major pain center. These are multidisciplinary operations.
9. Try to live as happy a life as possible and allow the person to simply sit in your midst as you do so.
10. Don’t give empty advice to them, or allow others to give amateurish pain advice. It is a thinly veiled way of calling them stupid. People with severe pain have generally done everything already which can be thought of. Don’t fall for crock or miracle cures. It just ends in disappointment when it doesn’t work.
11. Occasionally, getting the person out of the house and involved in some activity or travel is very beneficial, but make sure movement itself is not painful.