Tips on Advocating

Just when I think I am getting a firm handle on my life, another medical
issue hits and knocks me off my feet. I can't seem to regain or maintain any
balance in my life!

When you and/or your child learn about the diagnosis of Mitochondrial Disease, it can be extremely frightening. As time goes on you will begin to develop some perspective and distance from the initial shock of your diagnosis. Bills will need to be paid, laundry done, birthday's celebrated, holidays respected - in other words life will go on. For patients or parents who are dealing with this for the first time this maybe hard to imagine but ask a "Mito" veteran and assuredly it is true. This is when the questions about, "how do I live with Mito" begin to get asked. "How do I get off this roller coaster called my life?" To some extent, the ups and downs can't be avoided,

but there are some things you can do to gain some control and lessen the disruptions caused by these ups and downs. It may take some work but it will be worth it.

The following three strategies can be effective in reducing the degree of disruption caused by the ups and downs of living with mitochondrial disease. Even doing just one of them can allow you to step off the rollercoaster or at least control the brake pedal!

Control your information flow

Control your responses

Control the quality of your life

Control your information flow

Choose how you want or need to receive non-emergency medical information. This is usually never considered but can become essential in developing quality in your life. Here is one example about a parent but adults can relate to it as well:

A mother of three children affected by Mito disease begins her day, not your ordinary day, but a Mito-ordinary day! Just when she thinks things are under control and she is getting the hang of it, the phone rings and the neurologist tells her that the EKG (electrocardiogram-a tracing on paper that shows the electrical activity of the heart) from one her children's sleep studies showed an enlarged left ventricle. The mother has 101 questions, and the neurologist cannot answer 50 of the 101 questions. He tells her he will need to call the other doctors to gather more information, and suggests she make an appointment with a cardiologist. Mom agrees, hangs up the phone and understandably panics! Her thoughts become consumed by this new information. She calls her husband and tells him what has occurred and he asks her 102 questions. Anxiety and some panic takes over and they begin to research articles, they go on-line to search "enlarged left ventricle" and on it goes...crisis mode kicks in! She forgot about the shopping she was supposed to do, oops! She forgot the therapy appointment for one of the other kids, never made it to the bank, you get the idea. This is the roller coaster of mitochondrial disease.

This is how most of us receive our medical info but it doesn't have to be this way. Quite a few people were out of the loop in this verbal exchange: the primary doctor, the metabolic specialist, the cardiologist. By creating a rather formal method of information dissemination the parents can help to control the non-emergency ups and downs that go along with having a mitochondrial disease. The goal is to give your primary doctor the opportunity to become an expert along with you in your mitochondrial disease. When you become the case manager and the only expert in your care, the primary care doctor is left out of what is their primary role. They are busy, but there are many doctors who've really want to take the initiative and learn about mitochondrial disease but have felt out of the loop. If they receive information about your abnormal EKG reading from you, it leaves them at loose ends as to what they can do to help you.

They will always be one step behind where you need them to be. The medical system is extremely challenging to navigate: the more complex the care, the more difficult the navigation. One way to have your physician become a partner with you and your family is to schedule a meeting to talk to them (this can be on the phone or it can be face-to-face). Explain to your physician that you would like receive non-emergency medical information and results through them: the who, what, where, when and how. Have a pad of paper to write down what's being told to you. This will give you something to refer back to when questions come up. Sometimes as patients or parents, we become anxious about the information that's being given to us and we may only hear one quarter to one half of what the medical profession was telling us. Having something to refer back to will help to control any anxiety you may have over thoughts that sudden pop into your head.

In the case above, the pediatrician could have spoken with the neurologist, received a copy of the test results, and contacted the metabolic specialist about what cardiologist was working with the mitochondrial clinics. They then would make their recommendations to you based on a review of the information. This allows the pediatrician to become increasingly knowledgeable about mitochondrial disease and about your child specifically. Patients and parents do become the experts in their or their child's disease. BUT they shouldn't be the only expert.

To take this from a more altruistic point of view, when your doctor becomes more knowledgeable about one child, it expands the professional's knowledge about how mitochondrial disease can impact the lives of other children that might be in their practice. Having a little-known disease, like mitochondrial disease, can be a lonely place By involving more of the professionals that are involved in the care of you and/or your child you expand the circle of support that your family will receive and, like a pebble in a pond, the ripples will extend far beyond just you and your child. If you are fortunate to have a physician/pediatrician who is willing to get involved in the care of your child, encourage them to become empowered and to become a partner in care with you. If your physician/pediatrician is not willing to work in a partnership with you, you may need to consider finding one that will.

Control your responses

When you hear new information one of the things you can ask yourself, "is anything bad happening right now.", "is there anything I can do to fix this situation right now?"

If the answer is no, then go forward with your day. If you had planned to take your child to the park, go to the park. If you had plans to go to dinner with your husband, go to dinner with your husband. If you planned to go out with friends, by all means go. This is obviously not as easy as it sounds. Over time, you will get better at this. These very steps will help you ensure that you have quality in your life.

Long-term stress can have a tremendous consequence on your own personal health, on the health of your child and the health of your family unit. In the Mito world, never underestimate the effects that psychological stress can have on a person's fatigue and symptoms. You have a choice and must choose to not function in your everyday life as if every situation was a crisis.

Control your quality of life

Another strategy that may help is to teach yourself is how to compartmentalize through visualization new and overwhelming information. As an example, begin with closing your eyes, imagine a filing cabinet, see yourself pulling open the drawer of the filing cabinet and placing inside it a visual picture of this new information, see yourself closing the filing cabinet drawer. Then imagine a to-do list entitled filing cabinet. Imagine writing down what you put in that filing cabinet. This will give your mind control over the information you receive so it won't become engulfed by the information. Of course, at some point you will need to open that filing cabinet and take the information out, look at it, study it and see how it fits in with your family and see what you have to do with it and if there are things you can do to address it. There will be times when you will be able to cope with that new information and there will be times when it needs to be put aside to be coped with at a time that you are better able to deal effectively.