Anyone with EDS will tell you about the hoops that must be jumped through in order to be taken seriously and to get proper treatment. There is so much ignorance out there about this genetic condition that many doctors (even after a diagnosis) continue to blame physical symptoms on mental problems. The first time my daughter was not believed by the medical community was back in sixth grade. Even after meeting with two psychologists in a leading hospital and passing their exam with flying colors, doctors still continued to blame the patient, dismiss a physical diagnosis, and point toward a mental disorder. This left lasting scars to a child that remain to this day. It took eight years to receive an accurate diagnosis! No wonder we, as EDS Mamas, have mixed feelings toward psychologists and psychiatrists!
I am so thankful for the Ehlers Danlos National Foundation which educates the medical community and tries to help minimize these scenarios. Still, there is a lot of progress to be made, and unfortunately, this attitude becomes very normal in the day to day doctor visits of EDS patients. Some doctors probably tire of the physical problems which do not have easy fixes. Even after working with a doctor for years, you may be startled to hear him or her start to bring up mental issues. Sometimes it is easier to blame emotional factors than to admit an inability to help the patient. Time to find a new doctor! Unfortunately, this can cause an EDS Mama to want to avoid psychiatrists altogether!
Dear sister, you may be worried about your child coping with the challenging life that EDS brings. My husband and I did. We forced our daughter to see a psychologist just to make sure she was coping in healthy ways. Even after passing this initial test, we took her to a Christian counseling facility to meet regularly with a psychologist. Your child may be saying he or she is fine, but EDS is a very difficult road to travel. Sometimes as parents we are afraid to take our child to a therapist because we do not want physical problems to be dismissed as mental problems, but we have to get beyond this because these children are socially cut off, in extreme physical pain, and often not attaining the same milestones as their peers. How are they possibly coping?! If you fail to address the mental side of treatment, you may find out when it is too late that your child was not managing as well as initially thought. We have to be open to the idea that our child may need support for a co-morbid mental condition or, at the very least, need someone to talk with so that he or she can be mentally healthy.
Proceed cautiously though. You WILL run into psychiatrists who want to make bigger issues just so they look like they have it all figured out. They want to make mountains out of molehills, which really holds you back from getting the help you need for your child. For example, you do not want to be focusing on a non-existent mental disorder when what you really need is a medical doctor or physical therapy. It was our experience that addiction based pain clinics sometimes put more emphasis on mental issues than was necessary. You may be stretched in your faith when the pain clinic will only help you if you use their pain psychologist! Do Not Be Afraid, EDS Mama! God has your back in all this! We do not have to be afraid of any man in this lifetime. “Greater is he that is in you, than he that is in the world,” I John 4:4 KJV. We have worked with some great psychologists who have added to the support that Mom and Dad are already giving. Pain Psychologists can teach pain techniques that might actually help to a certain extent!
I am so thankful for Christian counselors who can bring a spiritual, biblical perspective to emotional health. Even a non-Christian counselor can have benefit. Just remember that God is our great Physician: physical, mental, and spiritual! I do not believe that we can be completely mentally healthy without first being reconciled to God. Accepting His Son as our Savior is the first step toward healing. He is the best psychiatrist we could ever go to with our problems and we better be making an appointment with Him as well! As scary as it seems, EDS Mama, do not be afraid to address the mental side of healing for your child. God will go before you and protect you both.