10 posts tagged “patient tips”

Discussing your health condition with kids? 5 handy resources

Posted June 12th, 2018 by

With Father’s Day coming up this weekend, parenting is on our minds. Do you talk about your health with your kids, and how do you go about it? Read on to see where to get pointers as a parent living with cancer, a mental health condition or chronic illness.

5 sites or articles to bookmark

Every situation and child is different, but the following resources may come in handy before your heart-to-heart.

  • Wonders & Worries’ Illness Discussion Tips – “Honesty is your best asset,” explains Wonders & Worries, an organization that provides support to children whose parents are facing chronic or serious illnesses. Their detailed guide recommends providing “accurate information that is appropriate for your child’s developmental level related to the illness and its treatment.” For example, say the name of your disease when talking with your child (who’s likely to overhear it eventually) and keep kids (and their school) informed about your current medical status and what it’ll mean for your routine, such as: “Nana will pick you up from school this week.”
  • Michigan Health’s “What Kids of Different Ages Understand” – This article is specifically geared toward parents with cancer, but it has some tips that can be helpful for people with various health conditions. The “Children’s perspectives” section explains what children typically understand at different ages. Babies and toddlers may not comprehend a serious illness like cancer, but can pick up on worries or sadness and changes in routine. School-age children (5-11 years) may have heard untrue information (like “cancer is contagious”) or experience “magical thinking” (e.g. – “Mom’s cancer is because of something I did.”). Tweens and teens may be tempted to turn to “Dr. Google” and get misinformation if you don’t fill them in.
  • Dana-Farber Cancer Institute’s “Talking with Children About Cancer” – This guide offers more information about sharing a cancer diagnosis with your kids. Some of the main takeaways? Take a bit of time to prepare yourself for the discussion but don’t wait too long or follow a script. It’s healthy to acknowledge your own feelings, like: “This is all new to me, too, and I feel worried and sad right now. But we will get through this together, and I will feel better sometime soon.” Also, don’t expect perfection. “There is no ‘perfect’ way to have this conversation. You may burst into tears before saying a word, or snap at your partner for telling your kids to ‘behave,’ or cringe when your son makes light of the whole conversation. Forgive quickly. This is a tough time for everyone.”
  • AACAP’s “Talking to Kids About Mental Illnesses” – The American Academy of Child and Adolescent Psychiatry says that parents (with or without mental health conditions) can help prevent stigma and stereotypes by discussing these conditions. “When explaining to a child about how a mental illness affects a person, it may be helpful to make a comparison to a physical illness. For example, many people get sick with a cold or the flu, but only a few get really sick with something serious like pneumonia. People who have a cold are usually able to do their normal activities. However, if they get pneumonia, they will have to take medicine and may have to go to the hospital. Similarly, feelings of sadness, anxiety, worry, irritability, or sleep problems are common for most people. However, when these feelings get very strong, last for a long period of time, and begin to interfere with school, work, and relationships, it may be a sign of a mental illness that requires treatment.” PsychCentral and The Mighty also have helpful ideas for informing and supporting kids.
  • PBS Parents’ Kid-Friendly Medical Dictionary – This glossary covers only some health-related lingo (mostly related to illnesses kids might encounter themselves). But it gives a sense of how to explain complex terms to curious kids. “Kids think about their bodies in very visual, literal ways. Therefore, experts recommend parents answer medical questions using age-appropriate, simple, easy-to-visualize terms. Be brief and only tell your child what she needs to know, as too much information may overwhelm her. At the same time, respect your child’s intelligence and try not to dumb ideas down. It is useful to explain both what a condition or illness is and how it’s treated.” You can also look for children’s books that can help explain cancermental health conditions, the human body and more.

On PatientsLikeMe, nearly 17,000 members include “parenting” as an interest on their profile. Join the community today to connect with fellow moms and dads, and log in to explore thousands of forum posts about parenting and topics tagged with “parenting.”

Have you talked about your diagnosis or condition with your kid(s) (or grandkids)? Any pointers or resources to add? Make a comment below or in the forum discussion!

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How to prepare for a doctor’s appointment: 7 tips from member Cathy

Posted June 8th, 2018 by

Ever feel confused or overwhelmed after a doctor’s appointment? Forget to ask important questions or bring up new symptoms? Covering all of your concerns in a 30-minute appointment can be tricky. MS community member Cathy can relate — read on to see how she’s learned to make the most of her appointments and check out her 7 tips for getting the answers she needs.

In 1986 I noticed something was awry when my legs were completely numb, my arms were weak, and I was always physically exhausted. I felt scared, isolated and confused. I scheduled an appointment with my internist who referred me to a neurologist. After a spinal tap and CT scan the tests were conclusive. I had multiple sclerosis.

I was happy to have a name for what I had but that didn’t diminish my confusion. I decided my neurologist would lighten my emotional load at my next appointment and, like Scarlett O’Hara, I’d think about it all another day. In hindsight I realize this was not a good plan.

Learning how to self-advocate

One of the most important lessons I learned over the last three decades is you must always advocate for your health instead of letting others do it for you. Self-advocacy must be our number one priority. In today’s health care climate, when doctors are often inundated and pressed for time, it’s crucial to get answers to our questions during the thirty minutes or so of medical appointments.

As Megan Weigel, a Doctor of Nursing and the president of the International Organization of Multiple Sclerosis Nurses explains:

“The advice I give about preparing for a doctor’s appointment is to think about your goals for the visit and consider that your healthcare provider may have different goals. For example, you may want to talk about your top three most bothersome symptoms, and your provider may need to talk about labs…or other tests that you need. I usually tell patients to have a list of questions that they want to ask or topics that they want to discuss. I also tell them to come prepared to take notes…and to ask for what you need, including written instructions or what to follow up on in the office.”

Preparing for your next doctor’s appointment:

To avoid feeling anxious, overwhelmed or worried about doctor appointments I created a list of reminders I use so I will be fully prepared for my next visit:

  • Organize your medical history by having copies of medical records, x-rays, scans or other lab tests and the names/phone numbers of previous doctors. You can have these sent directly to your doctor from your previous doctor (you will first need to sign a consent form) either before your appointment or bring them with you.
  • Keep a journal of your symptoms. It does’t need to be elaborate, just a word or two to help you remember.
  • Bring a list of questions with you. I keep a piece of paper on my nightstand to write down questions and concerns I have. Do not leave your appointment until everything on your list is addressed.
  • Ask a family member or friend to come with you to help explain your symptoms, or to be a good listener and take notes.
  • Be specific about your symptoms, how they affect you and when they happen.
  • Bring a list of any medications and supplements you are taking including dosage and inform the doctor of any allergic reactions to medications.
  • Request a brief verbal summary and follow-up instructions to review what was discussed. If you’re nervous or need extra time to process information this review can be particularly helpful.

Remember that you and your doctor are managing your health as a team. The more prepared you are for your appointment the stronger your team will be!

How do you prepare for a doctor’s appointment? Anything you’d add to Cathy’s list? Join PatientsLikeMe to chime in and get more tips from the community.

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