Members & Followers

Tuesday, December 20, 2011

Chronic Illness and the Holidays


Speak Up:

"Many chronic illnesses, such as diabetes, depression, arthritis, fibromyalgia, etc., are 'invisible,'" Fennell says. "People go to work or volunteer or shuttle kids to school. Most of the time, they don't look sick. When illness flares up, their pain is invisible. Or they have bone-numbing fatigue, so bad that they can't take a shower and go to the store in the same day. There's a cultural misperception that says you're not sick unless you look sick. They need to make their illness visible by talking about it."
Fennell, who is president and CEO of Albany Health Management, Inc., in Albany, N.Y., coaches patients on how to negotiate needs. "People don't know how to ask for what they need. They'll stay home from a holiday party because they can't stand that long. We need a new social etiquette for people with chronic illness."

Party Strategies: Ask for What You Need in Advance

Fennell describes a typical holiday scenario. "You're invited to Aunt Jane's. Let her know that you'll do your best to attend her party, but that if your illness flares up, you may have to bow out. Ask her how much lead time she needs. She'll say, 'Anything's fine.' Tell her you'll call her 48 hours in advance to let her know. Uncle Bob will still be annoyed if you don't come, but if you predict that you're unpredictable, people will generally handle it better."
She advises stating your needs in behavioral rather than general terms. "Don't just tell Aunt Jane you'll have to leave early. Tell her you've been feeling fatigued and can stay only two or three hours. Also tell her that standing tires you out, and ask her to have a seat for you. Putting it in behavioral terms makes it easier for Aunt Jane to conceptualize and to accommodate."
Many hosts and restaurants have become accustomed to considering various dietary needs for guests who have heart disease or diabetes or another condition that requires a restricted diet. "They should be offering options for people,"  "If you don't know what's being served, carry a large handbag with snacks and water, or offer to bring a dish that can be shared with others."
When you're the host, whatever you do don't wait till the last minute to ask for help, says Joffe. "You may not get the help you need. And if people do help, they might resent it. Become an expert at planning. Asking in advance allows people to help gracefully."

Managing the Handicap Parking Space

Shopping and gift giving present special challenges, not the least of which is managing the mall. If your illness is invisible, the challenge can start when you get out of your car. Some less-than-jolly shopper who parked way out in left field will let you know that you have no business parking in a handicap space. Try to think of a humorous retort, like that of a cancer patient who plucks off her wig and smiles.
Joffe advises not letting presents and errands get out of control. "Many people with chronic illness aren't in the best financial situation but don't have the energy to shop for bargains. Plan in advance. Take a day off work so you can shop yet avoid the weekend crowds. The key is what matters most to you. Is it going into your bank account? Would a simple note do? Don't go into lock-step motion."

Sunday, December 11, 2011

SSA to Expand Compassionate Allowances List in 2012

Social Security Administration (SSA) has notified the APF that it hopes to expand its Compassionate Allowances list in 2012. 

As most of you know, Compassionate Allowances are diagnoses so severely disabling that affected individuals, almost always, ultimately are approved for Social Security disability assistance, when they apply. However, the approval process may take a long time, particularly with rare diseases. For that reason, Social Security Commissioner, Michael Astrue, worked with his staff to create the Compassionate Allowances program early in his tenure as commissioner. 

Having a disease that is on the Compassionate Allowances list doesn't guarantee that a patient will be given approval for disability assistance. However, it does guarantee a timely review of his/her application for assistance.

To give SSA time to conduct a thorough review of all suggested diagnoses, the APF will be submitting its suggestions to SSA immediately. We must have information by Tuesday, December 13. The requirements are very specific.

SSA's definition of disability is as follows:

Adults: You must be unable to do any substantial work because of your medical condition(s); and your medical condition(s) must have lasted, or be expected to last, at least 1 year, or be expected to result in your death.

Children: The child must have a physical or mental condition(s) that very seriously limits his or her activities; and the condition(s) must have lasted, or be expected to last, at least 1 year or result in death.

Please contact the APF or email Desiree Lyon at

lyonapf@aol.com

Your input is very important!