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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.
  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 records 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.  The MitoAction Mobile App is a great tool to help you keep things in order and to track your day-to-day.
  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. Find a family representative. 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. Join support groups. MitoAction offers weekly support groups each Friday or feel free to contact us through the Mito411 helpline at (888) MITO-411.

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.

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Comments

cannkirkland's picture

cannkirkland

09/25/2008

I think all the suggestions above are helpful and make sense. Unfortunately, #2 "educating your primary care physician" is not easy. In my experiences over the past 10 years of trying to find a diagnosis, I've found that most physicians are very closed when it comes to receiving information. It also seems that if they don't know the answer, the illness must be in the patient's head. I was carried into an ER by my husband on a weekend after I experienced an episode of not being able to walk. The on-call neurologist diagnosed my condition as somatic! As if I'd rather spend my Sundays in the ER pretending I can't walk than being at the beach with my husband and dog. Ten years of being told it's all in my head led to major depression. I finally was convinced I was an insane hypochondriac and went to a psychiatrist for help. He told me it wasn't in my head and that I obviously had something going on within my body. My husband and I made the decision to go to the Mayo Clinic in Rochester and after two weeks of extensive testing, a muscle biopsy revealed COX negative fibers leading to a diagnosis of mitochondrial disease. I am traumatized by the experience of 10 years of dealing with physicians who tried to convince me that I was crazy. It's ironic that the psychiatrist was the only one who believed me and thought I was completely sane. To me, this shows the arrogance of physicians. If they don't know the answer, it's not about their lack of knowledge or ignorance, it has to be a mental disorder on the patient's part. I think it should be a crime for physicians to label their patients in such a way. It is mentally abusive and it is the last thing a person needs when he/she is absolutely exhausted and feeling ill.
Mitch Allen's picture

Mitch Allen

11/04/2008

Re: cannkirkland. I spent the last six years, Nine different Doctors from the west coast to columbia in NYC. And finally recieved a half hearted diagnoses last year.It's as if these Doctors won't do the research or are afraid to admit that they don't know.I also was put on anti depresents because they thought it must be in my head.

I'm currently taking a supplement called Lutimax which has reduced my pain level to almost tolerable.{not feeling like jumping off a  bridge! }Is there anything you can suggest ?

My prayers are with you and all of us in this "boat" together.

keefe's picture

keefe

11/11/2008

I have a daughter with a complex l and lll defect and have had a rough road medically myself. I have been hospitalized twice, diagnosed with adrenal insufficiency, severe iron deficiency anemia and B12 anemia, blood transfusions, iron infusion, hysterectomy to help with the anemia, severe GI problems, severe migraines, weight loss, and muscle weakness. I have seen multiple doctors and tried to educate them, the usual response is that my condition is "rare, can't be explained, but not related to my daughters mitochondrial disorder." Seems to be no help for the adults!
beck7422's picture

beck7422

02/15/2009

Adults don't get sick, only children do. The children that get sick have overprotective parents that are causing the children to get sick due to their anxiousness and hovering. This sick and disgusting thinking is the garbage I hear all the time from doctors. The more dangerous the health condition the more people hear this crap.
Nouseas's picture

Nouseas

05/28/2011

Where can I download the Drupal template you're using on your site? Could you just tell me the name and I'll find it?

stacye's picture

stacye

03/27/2013

This pain and fatigue has been going on for over 6 years and getting worse. I have been to several doctors only to be told I had fibromyalga. I have friends with this and I knew it wasn't the same. It was hard to convince a doctor that I knew my body and there was something wrong. I told my husband that if I had a gapeing wound that they would believe me I had pain but because it can't be seen, then it must be in my head. I finally changes doctors and he began to look over my past tests and noticed one test that just didn't look right. He researched and still could not satisfy his curiosity. He contacted the University of Utah and was able to talk to a specialist there that immediately had the answer. Since then I have had several tests and bloodwork. My last surgery was a muscle biopsy. I am still waiting for the final answer. They are very sure it is Mitochondrial but the final stamp has not been put on it yet. I am scared. If I talk with my family it worries them and upsets them so I don't want to do that. I feel like a whiner. If I work for a day, I am flat in bed the next with migraines and fatigue. I am dizzy all the time and unsteady on my feet. I am fearing that I won't be able to work much longer and we need the income. I just want to cry sometimes but it doesn't do any good. I feel so useless. My daughter found this website so I am hoping I can find someone to talk with.
Praying for a cure soon.

Stacye