One of your biggest challenges, EDS Mama, is finding doctors that feel like part of a team to help your child. With so many body systems involved in EDS, we go from doctor to doctor trying to address all the problems our child is facing. We schedule appointments with a variety of doctors at multiple facilities (possibly even outside of our state) who are usually specialized only in their area of expertise. We have no idea if they are familiar with EDS or what their attitude toward us will be. You likely have notebooks filled with medical history at your house and have to decide what is pertinent to take to a first appointment. When you finally sit face to face with this doctor, he or she may not even care to look at any of it and may not be interested in really listening to you. Before even entering your room, he may already have made up his mind that you are overreacting to your child’s symptoms and are making things worse by dwelling on them. You will meet doctors who think that because they work at a specific establishment, they already know everything, and yet by their attitude and words, they show that they do not know the first thing about EDS or dysautonomia. They are ignorant bigots. Sometimes the best thing you can do in these situations is to say thank you and move onto the next doctor.
This process gets discouraging to put it mildly. Unfortunately for so many, it may take years to find compassionate doctors who understand EDS, and as a result, you will be forced to be under the care of one or more of these abrasive types for a long time just so your child can receive some kind of care, even if it is not the optimum. It will be hard, but you will learn some important lessons. First you learn humility because they right away make you feel very small, like you do not know anything. But humility teaches you that this journey is not about us, but about God. You learn that doctors are only doctors, not God. They do not have all the answers. You learn that God may have placed you in this doctor’s presence more for him than for you. We have no idea what this person even thinks about God. I pray for boldness for you, dear one, that you will never lose an opportunity to humbly point that doctor back to his Creator. You also learn to search for the kind of peace that only comes from God. The days leading up to an appointment with one of these types would create tremendous anxiety for me. All I could do was pray constantly, especially in the waiting room and throughout the appointment. You learn that GOD may provide some help through this individual but it might be contrary to your thinking. I have seen that sometimes what God provided through this doctor turned out to be the best thing for my child in the long run. It reminds me that my plans are not always what is best for my child, but God’s plans are always perfect. If your child happens to improve while under the care of this prideful, abrasive doctor, he will likely think it is due to him and he will puff up even more! This has a way of humbling me further. In these cases, I try to control my tongue, smile, and in my heart thank my Father who is working all things out for our good.
But do not lose heart, my friend! You never know when God is going to change your direction and send you a wonderful doctor! It happened again for us just recently after carrying a heavy burden for several years trying to work with a particular doctor. When God finally sends you these gems, it feels like the heavens have opened up and choirs of angels are rejoicing! My heart still feels giddy at this recent change; such a huge weight has been lifted. I will not fully understand the work of God and why He allows the things He does, but I fall to His feet and praise Him when I see Him answer me, sometimes after many years of praying. You know right away when you have found one of these doctors. They are good listeners, are familiar with EDS and dysautonomia, are quick to admit they may not have all the answers, and are genuinely concerned with helping you. As a result of my experiences with doctors, God has shown me not to put all my trust in these good doctors either. They may be wonderful doctors, but I have to keep God first as my Great Physician.
You are not alone on this difficult journey, EDS Mama. We may not have met, but I am praying for you still. Jeremiah 33:3 tells us, “Call unto me and I will answer thee, and show thee great and mighty things which thou knowest not.” It may take time, but He WILL do it in HIS time.