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Sickle Cell Patients Concern: When No One Believes You
Patients with Sickle Cell hide pain well due the the fact that most of us have suffered with Sickle Cell since birth, so naturally we suffer through pain well in order to not scare our friends or families. We hide pain to keep our loved ones from fearing the worst. But when we are in the hospital doctors and nurses usually underestimate the pain level we are in until it is too late. If we are in the hospital it is because the pain level is no longer manageable at home, so we are already in a state of extreme pain - but our faces do not show it. The pain seems invisible to health care providers. Here are some suggestions:
Patients with Sickle Cell hide pain well due the the fact that most of us have suffered with Sickle Cell since birth, so naturally we suffer through pain well in order to not scare our friends or families. We hide pain to keep our loved ones from fearing the worst. But when we are in the hospital doctors and nurses usually underestimate the pain level we are in until it is too late. If we are in the hospital it is because the pain level is no longer manageable at home, so we are already in a state of extreme pain - but our faces do not show it. The pain seems invisible to health care providers. Here are some suggestions:
- Have your hematologist and pain management specialist design a pain management & medications program for your medications and treatment and have them sign it, stamp it, and have them put their contact information on it. Make several photocopies of it and give it to your spouse, trusted friend, or family member as well. Give it to your other doctors as well. Take a copy with you if you have to go to the hospital, that way you have more credibility and do not have to tell them what your medications and treatments are. Sometimes when we try to explain we wind up sounding like drug seekers, so bring your signed pain management & medications program to help things go smoother for everyone. Try not to get too angry with people. Be patient with people as best you can. Health care professionals are people too and they try to do what they perceive is right. With that said, mistakes are made and having a signed and stamped pain management & medications program can help everyone stay on the same page.
- Call ahead to the hospital's hematologist on-call and your hematologist prior to going to the hospital and explain you are in extreme pain and cannot manage it at home.
- Bring some of your labeled medications and pain killers with you to emergency just in case they take too long to give you the medications you need.
- Join a pain management support group and a Sickle Cell Support group to get encouragement and support. There are many, many - find one in your area.
- Find a therapist, counselor, or psychologist that specialize in trauma or pain management so you have someone to talk to. Don't feel ashamed of this - Sickle Cell related issues and the pain it causes can wear us down over time, so it is necessary to seek help to keep us on track; give us new coping strategies and ways of looking at things. The pain (physically, emotionally, financially, etc) from Sickle Cell are overwhelming sometimes and they are valid issues worthy of seeing someone. You should always have someone to talk to that you trust and respect. Not all therapists are equal. Interview several until you have one that you like. Trust your gut. If they wish to prescribe something always get a second opinion.
- Find a spiritual advisor if you feel this will be helpful (ie. a Priest, Priestess, Rabbi, Lama, Guru, Shaman, or various spiritual teachers, etc). Again, trust your gut, not all spiritual advisors are equal or qualified, so take your time until you find someone that works for you. There are some advisors that specialize in pain such as meditation instructors that specialize in chronic and acute pain.
- Trust and have faith in yourself. Build teams of support all around you (ie. supportive health care professionals / specialists, friends, family, support groups, therapists, spiritual advisors, etc). If you have a doctor you do not trust, does not listen to you or does not believe you, find someone new asap. The goal is to have a trustworthy team of health care professionals that DO believe you and will work with you to keep you healthy using the most updated / current Sickle Cell medical information there is.
