So, I just received some bad medical news, and I am not sure how to deal with it? I have been told I have a disease and don’t understand how it may affect me. So I have been given the following advice:
1. Be prepared for potential bad news. If you have not already received the bad medical news, but suspect you will (e.g. your doctors calls you to schedule an appointment to go over some test results that you think will be bad news), try to prepare for it emotionally. Anticipate the worst news possible, so you would not be shell-shocked upon actually receiving bad news. Bring a family member or close friend with you to the appointment: this will not only help provide you support at the moment when you need it most, but will also help clarify the bad news and write things down, as you could become shocked upon getting the bad medical news and not be able to ask appropriate questions or comprehend any explanations that follow.
2. Clarify what exactly the bad medical news is and how it will affect you. This may take time and often even more than one meeting to accomplish, as shock and denial is frequently the first emotional response to very bad news. Most people, upon receiving the bad news, become flooded with emotions, making it difficult to comprehend any discussion that follows. If that is the case, it is often helpful to ask the doctor to give you written materials about the condition and its treatment so you can go home and read more about it later in a better state of mind.
3. Find out all about your condition from reliable sources. Search for your condition on the internet, find books in the library, read journals and articles that discuss this condition. Humans tend to fear the unknown. The more you know about the condition, the more comfortable you will be and be prepared to deal with its ramifications. Try to keep in mind that the information posted on the internet cause even more fear, you might want to avoid the internet and talk to a local support group. They can recommend which sites for good information and which sites to avoid.
4. Try to stay calm. Excessive worry will not help. Don’t overreact to bad medical news. Understand that one cannot change what has already happened, but only how one responds to it. Try to keep your cool to focus on its solutions.
5. Get as much support as you can, immediately. Don’t say I’ll try to deal with it myself, and if I need help I’ll get it later. Later may be too late. Tell it immediately to all your loved ones and friends who will listen to you. They may be able to offer you helpful insights on how to deal with condition. And the process of opening up to others is emotionally healing by itself.
6. Be aware of the common Kübler-Ross grief stages to receiving bad news: Denial, Anger, Bargaining, Grieving, Acceptance. Most people go through these stages, though not necessarily in this order, and often may experience more than one stage at a time. Seek professional help (e.g. counseling, psychiatrist) if necessary.
7. Don’t dwell too much on the bad medical news. Exercise, spend time with others, do fun things, and think happy thoughts. Smile. Meditate. Pray (if you are religious). Try to develop and maintain a positive attitude always, and not let bad medical news prevent you from living your normal life and carrying out your daily duties.
8. Be prepared for the worst outcomes. If you are given a limited life expectancy based on the disease prognosis, plan ahead to accomplish what you need to do before your time comes to leave the world. (Look into palliative care; who can not only make the transition more comfortable but may improve the quality of life as well.) Maybe it’s a book you need to finish writing, maybe it’s an old acquaintance you need to forgive, or maybe it’s some unfinished project you need to fulfill. In any case, make sure these things get done while you can. Have a living will or durable power of attorney if applicable.
Charcot-Marie-Tooth disease (CMT)
CMT causes degeneration of the peripheral nerves, leading to muscle weakness in the body’s extremities. CMT causes damage to the peripheral nerves, which carry signals from the brain and spinal cord to the muscles, and relay sensations, such as pain and touch, to the brain and spinal cord from the rest of the body. There are a number of types of CMT.
What are the symptoms of CMT?
CMT causes muscle weakness and atrophy, and some loss of sensation in the feet, the lower legs, the hands and the forearms. It also often causes contractures (stiffened joints due to abnormal tightening of muscles and associated tissues), and sometimes, curvature of the spine (scoliosis).
At the severe end of the CMT spectrum, the disease can affect nerves other than those that go to and from the extremities. If the nerves that go to and from the diaphragm or intercostal (between the ribs) muscles are affected, respiratory impairment can be effected.
What causes CMT?
CMT is caused by defects in the genes for proteins that affect axons — fibers that carry electrical signals between the brain and spinal cord and the rest of the body — or in the genes for proteins that affect myelin, a coating on axons that insulates and nourishes them.
More than 30 genes have been implicated in CMT, each one linked to a specific type (and in many cases, more than one type) of the disease.
CMT can be inherited in several ways: autosomal dominant (through a faulty gene contributed by either parent); autosomal recessive (through a faulty gene contributed by each parent); or X-linked (through a gene on the X chromosome contributed by either parent.) For more on causes and inheritance patterns in CMT.