Emotional Health

Dealing with an illness is hard enough. Let’s add to the mix Dealing with Family, Dealing with Friends, Dealing with Work or Dealing with School. Sounds like a party, right? Some tips for managing the multiple stressors that these interactions can present:

1) You are not the disease
Don’t let your focus become the disease. Don’t let others do it to you either. You are a whole person with interests, goals and dreams. Let loved ones know you appreciate “How are you?” but not necessarily “How’s your health?” or “You’re looking tired” or “Are you sure you can do that?”

An important corollary to not becoming defined by the disease is limiting your urge to troll the internet for every single shred and nugget of information you can find on aplastic anemia. Seriously. We’ll give you a break if you are newly diagnosed, but beyond a certain point it is counterproductive to so thoroughly immerse yourself in the literature that you are constantly comparing yourself to external factors. This is not to say that I don’t love that you are here and want you to come back often! But take a break from the hunt for information. If you need some encouragement to give up the habit, click on the links on this site for some Absolutely Guaranteed To Not Discuss Aplastic Anemia web sites. Click it. Think about something else. You know you want to.

2) Stay Interested and Engaged
Keep memberships you had before the diagnosis. You may have to change the type of participation you have, but don’t lose those important social connections. You need diversion and a sense of purpose beyond surviving a disease and not feeling sick. Make yourself go even when you don’t feel like it. Trust me; getting off the couch is 90% of the battle. Some fantastic organizations and resources for getting involved in whatever way you may be able to participate:
• http://www.meetup.com
• http://www.nationalexchangeclub.com

• http://www.freedomcorps.gov
• http://www.volunteermatch.org

3) Your life story is your own
Determine who needs to know what about your condition. Employers and schools will most likely need to know about planned absences for appointments or “bad days.” Friends love you and will want to know how they can support you. Family will need to know for obvious reasons. However--YOU decide whom you want to tell, and what level of detail to tell them. It is YOUR story to share, no one else's. Remember that not everyone needs to know if you don’t want them to. Don’t let others “out” you. This happened to me several times until I simply asked that my health not be considered dinner table discussion any more than anyone else's physical ailments (fibroids or hemorrhoids, anyone?) might be discussed publicly. People mean well, but it is your life and your story. And, going back to #1, your defining characteristic is not the disease.

Remember:

One's dignity may be assaulted, vandalized and cruelly mocked, but cannot be taken away unless it is surrendered.
--Michael J. Fox, in "Saving Milly" by Morton Kondracke