For adult patients with mitochondrial disease, it is a nearly universal experience that a medical provider has doubted the physical nature of their symptoms at some point in their medical journey. Adult patients frequently are characterized as faking symptoms, seeking attention, or otherwise suffering from psychological or psychiatric problems, which is extremely frustrating to patients with pain and other significant physical symptoms. Patients often go for many years without proper medical treatments while having psychological therapies suggested to them that do not alleviate the underlying physical issues.
Below are suggestions collected from several adult patients and caregivers regarding how to best address allegations that their symptoms are not “real” should they arise.
- Learn to advocate for yourself! MitoAction has concrete suggestions on how to improve communication with medical team members here. In addition, there are several podcasts on the subject of advocating effectively in a medical setting which are listed at the bottom of this page.
- Avoid situations that may lead to negative care consequences such as oversharing personal care information or difficult symptoms on social media, where it can be easily misinterpreted by friends, family, and even care providers.
- Educate your primary care physician and non-Mito specialists by providing a few relevant printed pages from the MitoAction website or share a copy of our Patient Kit.
- Share concerns about having your needs met by medical staff with a trusted family member or friend before an emergency occurs. Have a written summary of individual preferences and needs to use during an emergency. For specific guidance on such advance preparations, please click here.
- Call the doctor early on in an illness to seek treatment options that may avoid an emergency room visit. ER physicians are less likely to be familiar with complex, rare medical conditions. However, ER visits are necessary at times, even when the best medical precautions are taken, so be sure to use good judgment and go to the ER to avoid a crisis. If heading to the ER, ask a trusted doctor — ideally, your primary care physician — to call ahead to the ER and alert the staff to your needs. Bring an ER Protocol Letter that has been tailored to your specific needs by your mitochondrial disease specialist or another physician on your care team. Sample letters may be found here.
- Build a medical team experienced with complex patients, preferably a Mito-knowledgeable team. If possible, have a support person accompany you to physician appointments to take notes.
- Report all symptoms as honestly and accurately as possible. To help with symptom reporting, consider using the MitoAction Mobile platform to track your day-to-day journey with mito.
- Have a supply of cards or flyers in your purse or wallet that refer to a mitochondrial disease patient support or advocacy organization. This may provide a quick reference for busy physicians and other disciplines involved in your care. Brochures may be requested from MitoAction by email email@example.com or calling us at 888-648-6228.
- Build a support system to share experiences and offer advice in difficult situations.
- Family members and friends;
- MitoAction Weekly Support Groups – Weekly meeting on Fridays at noon EST. Toll-free call: 1-866-414-2828, enter participant code 017921#;
- MitoAction’s Mito411 hotline – e-mail firstname.lastname@example.org or call 1-888-MITO-411 (648-6411);
- MitoAction’s closed Facebook discussion group
One of the most important things you can do is keep an open dialog with your clinicians and care team. This step can be complicated, but a few suggestions that encourage team communication include the following:
- Establish a strong working relationship with primary care doctor. He/she should be the quarterback of care. Referrals, sick visits, and refills for routine medications should come from the primary care doctor, and other specialists should know how to get in touch with him or her.
- As much as possible, refrain from communicating ideas and diagnoses between your doctors as such communication can be a source of miscommunication, even raising suspicions of exaggeration of actual medical facts. Call ahead to make sure clinic notes from past important appointments have been shared between specialists, or obtain copies of your own records and keep them in a binder to share with specialists at appointments.
- If unhappy with your medical team, seek out new physicians that better fit your medical needs and personality. Remember, the patient should feel comfortable with each physician and has the right to expect consideration and respect from all parties when making care decisions. If “firing” multiple doctors, seek insight from a third party to assess if communication style is creating difficulties in care.
- Avoid hostility, anger and making demands of medical professionals which creates frustration for everyone, rarely leading to positive medical interactions. Learn to be patient and cooperative yet assertive about your needs and expectations.
Be open to changes and trialing new treatments in medical care. Even if a recommended change or treatment did not work in the past, consider retrying it. Bodies change over time and a plan that did not work well a few years ago may work if significant time has passed or medical circumstances have changed. Seek second opinions for major medical procedures like ports and feeding tubes.
If a physician suggests that anxiety or depression may be impacting overall health, consider this suggestion with an open mind. Whether due to the chronic stress of having a rare disease or actual mitochondrial dysregulation in the brain, a psychiatric component of Mito may exist that might need to be addressed and treated. For more information about the relationship between Mito and psychiatric issues, please refer to Dr. Andrew Nierenberg’s MitoAction podcast on this topic.
Psychiatric consults may be ordered when a patient is hospitalized and symptoms are not well understood. Do not feel discouraged, but rather approach the consult honestly, exploring possible psychiatric components of the presentation with the psychiatry team. Refusing the consult also may raise suspicion that the medical symptoms may indicate attention-seeking behavior. Cooperation demonstrates an openness to accept help for stressful life circumstances, and can actually lead to psychiatrists defending the validity of medical problems to other clinicians.
If an in-patient psychiatric evaluation is recommended, it is often possible to call upon others who might have a different perspective from the requesting doctor. Here are some options:
- Call support people to validate the patient’s perspective;
- Notify PCP, mitochondrial disease specialist, and any other specialist who would be supportive of the patient’s concerns;
- Contact any counselors, therapists, or psychiatrists with an established relationship with the patient. The professional opinion of an existing mental health team can calm fears regarding emergency psychiatric care, which is why it is often beneficial to include such professionals on the medical team of a complex patient;
- If there is strong disagreement about the need for an in-patient psychiatric evaluation, notify the hospital Ethics Committee and/or Ombudsman’s office about your situation and ask for a meeting as soon as possible.