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Advocate for Yourself by Asking Questions

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Published on January 20, 2020

Key Takeaways

  • Eat a healthy, balanced diet and exercise as much as you can by designating time each day to be active.
  • Be your own advocate by developing a relationship with your doctor and by asking questions..
  • Join a local or online support group.

Multiple myeloma expert  Dr. Sikander Ailawadhi from the Mayo Clinic shares his views on self-advocacy and gives recommendations that patients can actively do to feel more in control. He offers suggestions on developing the patient-doctor relationship and a good support system, lifestyle and overall well-being. Dr. Ailawadhi advises to start being your own advocate by asking questions—if you don't ask, you will never know.

This program is sponsored by GSK. This organization has no editorial control. It is produced by Patient Power. Patient Power is solely responsible for the content.

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Transcript | Advocate for Yourself by Asking Questions

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Esther Schorr:

What are some of the things that you recommend to your patients that they can actively do around their treatment and afterwards to help them feel as good as possible going on that journey?  

Dr. Ailawadhi:

Sure.  I think that's an excellent question because when we're spending the time with the patient we hardly have enough time to address their immediate needs, their treatment, their test results, whether they are responding or not, some side effects, and then we move on.  And then we talk about, well, the patients should have supportive care, they should have a lot of other things, and a lot of the centers or community partners may not have all those resources.  

So I think the first and foremost thing that is very important, what I tell my patients and I want them to keep in mind is while this term is used, be your own advocate, it's a pretty loaded sentence or a phrase.  I think the patient needs to develop a relationship with the doctor, be out of that fear that they may be able ask a question from their doctor.  They should feel comfortable asking questions.  If they have a side effect, they ask.  If they have a question, they ask.  If their other medications need to be adjusted, they ask. 

The patient should be always attached to their primary care physician.  It is extremely important.  The patient should always, always try to have a caregiver assigned and be present with them.  If someone has an issue with finances, if you don't ask you would not find out Leukemia & Lymphoma Society, American Cancer Society, they have resources to help patients.  But if you have a problem, you ask.  Develop that free‑flowing communication back and forth. 

Unfortunately, a lot of patients come and they are burdened by the fact that they are sick, and they are kind of keeping or taking a toll on their family, or are sometimes even apologetic for asking a question, and I have had so many patients who come and say, well, I saw all those who were sitting in the lobby.  They are much sicker.  I feel blessed.  I'm not that sick.  I'm okay.  No.  When I'm there with you, I'm there for you.  So ask that question and be your own advocate that way. 

I think eating a healthy, balanced diet is very important.  Exercise as much as possible is also very important.  Patients will sometimes say, yeah—I'm at Mayo Clinic.  We have a pretty big campus, and they'll say, well, I came to Mayo Clinic.  I walked enough, that's done.  I'm done with my exercise.  I know it's a toll on the body, but the brain works better with exercising if you designate a specific time of the day, this is my 15 minutes of exercise today.  That's important. 

If there is other symptom like depression, talk about it.  Don't make it into a taboo topic.  If you don't ask about it, psychiatric care will not be provided, right?  If you have pain you ask for pain medicine.  If you feel depressed you ask for an antidepressant. 

Esther Schorr:

If you don't ask, you won't find out. 

Dr. Ailawadhi:

You will not find out.  Those patients who are listening to this are doing another great job for themselves.  They are trying to gain knowledge.  I'm a huge proponent of support groups.  If you have a support group active from International Myeloma Foundation or however in your area, please join.  Read about the disease.  Try to understand.  It's difficult, but there is a lot of information out there. 

Esther Schorr:

Well, with that, we know why we enjoy having you on our program. 

Dr. Ailawadhi:

Thanks. 

Esther Schorr:

Because our tag line at Patient Power is knowledge can be the best medicine of all.  From ASH 2019, thank you, Doctor. 

Dr. Ailawadhi:

Thanks a lot. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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