Advocating for Yourself

I wish the doctors could figure out what's wrong with me or my child. We have been feeling sick for so long and nobody seems to know what to do.

How do we, as patients, learn to speak up and advocate for ourselves in these situations?

What is the best way to learn how to stand up for your needs or those of your child? Doctors can be intimidating in many situations. You need to be prepared with the knowledge necessary to keep yourself as healthy as possible. This includes basic knowledge of mitochondrial disease, what to do in emergency situations, and whom to contact when a problem arises.

Here are some steps to take so you can advocate for yourself effectively.

1. Educate yourself. This is one of the best ways to become your own best advocate. Read information on mitochondrial disease. Ask questions and become informed about treatments and ways to improve your care. When a doctor doesn't know much about mitochondrial disease, take a medical article or a brochure on mitochondrial disease with you to the appointment so that he or she can be better informed.
2. Educate your primary care physician (PCP) or pediatrician. This doctor should be the central person to all of your medical care. Since mitochondrial disease is so complex and varies in presentation, your PCP is the person to start with. This doctor should be the "medical home" for you or your child. This means that ideally this doctor should be coordinating care between all of the specialists that you or your child sees. He or she should be your advocate and should understand the whole picture of what is going on with you/your child. Getting a doctor to understand mitochondrial disease and advocate for you is important, especially if you aren't well enough to advocate for yourself or you are feeling overwhelmed with all the care that is involved.
3. Write down questions and take notes during appointments. This helps many people stay on target with the questions they want to ask during an appointment. It is easy to forget questions or become overwhelmed during an appointment but bringing a notepad with questions may help you stay focused on the most important issues.
4. Bring someone with you to appointments. Doctors' appointments can be overwhelming. Often times, patients are soaking up a lot of information when they see a new specialist. It can be helpful to bring a spouse or a friend with you to help take notes or remember questions for you. It can also be helpful to have someone with you for support. It can be hard to go into an appointment when you don't feel especially well or when your child is really sick. Having someone for support and to help you interpret information can be valuable.
5. Find a mitochondrial specialist. This doctor can guide you and your other doctors in the treatment of your particular symptoms. Finding a mitochondrial specialist is helpful in figuring out a diagnosis and learning certain tactics for living with mitochondrial disease. If you don't know where to look for a specialist, start with the Muscular Dystrophy Association (MDA) or the United Mitochondrial Disease Foundation (UMDF). These organizations may have lists of specialists near you.
6. Request copies of your medical records. Keeping copies of all of your records and lab reports can help all of your doctors see the full picture of your health. If you are going to a new specialist who has never met you, it will help to have those records available. This will make it easier for your doctors to understand what is going on with your health situation.
7. Develop action plans for emergency situations. This is extremely important in minimizing life threatening complications from mitochondrial disease. Make a plan with your primary care physician or mitochondrial specialist when you or your child is well so that you know what needs to be done in an emergency. For example, should certain bloodwork be done or should IV fluids containing glucose be started during an acute illness? Some mitochondrial specialists will write up a plan specifically for you or your child to be given to emergency department personnel.
8. Keep a binder of pertinent medical records, medications, primary physician contact information, lab sheets, articles about mitochondrial disease, and emergency protocols can be helpful, too. When an emergency arises, it's easy to grab the binder on the way out the door.
9. Request case management services from your health insurer and/or state department of public health. They can assist as advocates for services and healthcare. They can also advocate for you when medications or medical equipment isn't covered, but should be covered.
10. Family Representatives Ask your doctor or case manager to put you in contact with another patient or family in the same situation. This is a very powerful tool. Some insurance companies and the Department of Public Health have parents on call to assist new patients/families.
11. If necessary, find a new doctor. If you have tried many of the above tactics and you still feel like you aren't getting anywhere with your doctor then it may be time to find a new physician. Some doctors are too busy or may not have an interest in learning about mitochondrial disorders. If this is the case, it may be time to move on to someone new who can look at you from a different perspective.
12. Register with the MDA and UMDF. These are two organizations that are able to help people with mitochondrial disease. Since mitochondrial disease falls within the umbrella of neuromuscular disease, the MDA will provide help with obtaining a wheelchair, getting communication devices, going to summer camp, and getting support. The UMDF has conferences for families and physicians to attend and also has a booklet available for $2-3 that contains medical articles that can be given to patients and physicians. The booklet is called Think Mitochondria. Some states also have local UMDF support groups for families with mitochondrial disease. Both of these organizations have written materials on mitochondrial disease for yourself or your physician to read. I encourage you to look into both of these organizations at www.mdausa.org and www.umdf.org
13. Join online support groups. If you have a computer and would like to network with others, Yahoo! Health Groups has several support groups (listservs) online. These groups are primarily for support from others who are facing similar issues. The names of several listservs on the Yahoo! site are: Mito, Adultmito, Mitoldies. The latter two groups are for adults while the first group is primarily for parents of children affected with mitochondrial disease. There is also a support group for people with fatty acid oxidation disorders which can be accessed through the fatty acid oxidation family support organization at: www.fodsupport.org

Lastly, you're not alone! It seems to take most people a long time to get a diagnosis of mitochondrial disease. The diagnosis is difficult to obtain because the disease has so many different presentations. No two people with mitochondrial disease are alike. Primary care physicians often don•t have enough knowledge to make this diagnosis, so it is up to us to educate ourselves and find the best care for ourselves and our children.