Talking About Your Condition

Talking About Your Condition Talking About Your Condition

Talking About Your Condition

Finding out you have dermatomyositis (DM) or polymyositis (PM) can be stressful to begin with. But when you consider the other aspects of your life—your family or your job, for example—a new level of uncertainty is added into the mix.

It’s okay to feel stressed and anxious. These are normal human responses. And it’s how we cope. What’s important is taking steps to help lessen your stress before it gets out of hand. Get tips here to help you take those steps.

Talking to your family

Conditions like dermatomyositis and polymyositis can impact the whole family, not only the person living with the condition. It can cause changes and role reversals. And it can leave you feeling like you’re being more dependent on loved ones than you want to be.

That’s why it’s important to talk to family members right from the start. A chronic condition may not be an easy thing to discuss, especially with loved ones. But it can help you and those you care about deal with your condition together.

The following tips can help you prepare for these most important conversations. They are provided here as merely a guide.

  •  Be prepared
    •  Plan ahead. Figure out what you’re going to say ahead of time. Ask your doctor if he or she has any pointers to share
    •  Be open and honest about everything you need to talk about
    •  Share resources with loved ones about your condition. This way you don’t have to feel like you’re “always” talking about your symptoms and experiences. It will also give them the chance to learn about DM or PM at their own pace. Offer them copies of information provided by your doctor. You can also direct them to books and websites, including this one
    •  Set aside enough time for each discussion. And plan on different ways to talk with different loved ones. See below for tips on talking with children and your spouse or partner

Talking with your children

Depending on the age of your children, there are different ways to go about talking to them about DM or PM:

 

Ages 2-5 years old:

  • Plan on having short talks. Children this age have very short attention spans
  • Draw simple pictures if that helps you to simply explain details
  • Let them know you can talk about it anytime. And answer any questions they may have
  • Let them know how daily routines may change now or in the future
 

Ages 6-9 years old:

  • Plan on having more than one short talk to say everything you need to say. Children this age have short attention spans
  • Children this age may have strong feelings, but may not know how to fully express them. They may appear to be focused elsewhere when you talk with them. This is normal for this age group. It gives them a chance to process what you’re telling them
  • Use examples. Draw from their own experiences when they’ve been sick and went to see a doctor
  • Help set their expectations for the possible changes that may lie ahead in the near term
  • Calm their fears. Assure them that they will be taken care of
  • Let them know you can talk about it anytime. And answer any questions they may have
 

Ages 10-12 years old:

  • Plan on a longer discussion with kids in this age group
  • Be upfront about your condition. Use simple terms when talking about your symptoms and treatment
  • Know that topics your child seems to avoid might be something that he or she is fearful or unsure of
  • Talk about today and tomorrow. Explain how your condition may change things around holidays and family events
  • Assure your child that you’re there to talk and answer their questions whenever they need you
 

Ages 13-18 years old:

  • A longer discussion can be more appropriate for a teenager
  • Know that topics your teen seems to avoid or ignore might be something that he or she is fearful or unsure of
  • Be honest and direct about your condition. Give them the facts. Offer your teen books or websites (like this one), to learn more about DM or PM on his or her own time
  • Give him or her time to process things. Your teen might want time to be alone or connect with friends
  • When questions arise, answer them to the best of your ability. Don’t hold anything back
  • Explain how your condition might disrupt the order of things. Again, set expectations for possible changes to come. He or she will appreciate your honesty
  • Check in on how your teen is doing emotionally from time to time

Talking with your partner

There are many topics that you’ll most likely need to discuss with your partner. The following tips can help you get started:

  •  Set aside a quiet and private time to talk. If you can, make a date out of it. This way you can focus on one another’s concerns, but in a more casual and relaxed setting
  •  When you speak, speak from the heart. Put all your cards on the table. Let him or her know what your fears and concerns are
  •  Role reversals. How are the two of you handling your changing roles? Figure out what’s working and isn’t working. Devise a plan together on what chores may change hands. If you need to let go of some tougher responsibilities, now is the time to speak up
  •  Figure out which important decisions you should make together. And which ones you can make separately
  •  Tell your partner what you want to discuss beforehand. Be upfront. This way he or she will be better prepared to talk as well
  •  Open up about stress. Sometimes simply talking about stressful situations can help to defuse problems before they get out of hand
  •  Don’t expect to settle every matter in one sitting. As with any chronic condition, some things may take time to work themselves out
  •  Talk about any sexual problems that have come up. Dermatomyositis and polymyositis can have a major effect on a couple’s intimacy. It’s important to discuss concerns early. If you need to, consider talking to a therapist or counselor
  

Talking to your colleagues

Talking things through can apply to your job as well. The following tips are just suggestions. They are provided here as merely a guide when talking to professional colleagues about your condition.

  •  Be prepared
    •  Get a doctor’s note to provide to your boss. It should include information about your diagnosis and the severity of your condition
    •  Ask your doctor to explain to you if he or she feels your disease will affect your job performance at all
    •  Practice your talking points beforehand, and make sure you can talk about your disease in plainspoken, easy-to-understand terms. Use a family member or friend to stand in for your boss
  •  Talk the talk
    •  Be completely honest, calm, and clear when relating your situation
    •  Try not to get too emotional. Simply state the facts about your condition
    •  Emphasize your continued commitment to the company and your dedication to the job
    •  Ask your boss if you can telecommute (work from home) on days when fatigue and/or muscle weakness is a problem
    •  Let your boss know the steps you are taking to manage your condition and maintain your well-being
  •  Follow-up
    •  Schedule a check-in with your boss every 2 to 3 weeks to keep him or her up-to-date on how you’re doing

More from DM/PM & YOU

Stephanie

Living with polymyositis since 2009

“I stay active in support communities, especially online. I find it helpful to hear from other people about their experiences.”

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