What the Chronically Ill Want the Healthy to Know

  • I recently asked a group of chronically ill people, “If you could let people know one thing about being chronically ill. what would it be.”I heard the same answer a few times.  ‘I would want them to know how lonely I am,’  ‘I can deal with the loneliness, but it’s the pain that I can’t take.’ or ‘Come visit me.’

    I can understand though I am fortunate enough to have a wonderful partner and understanding friends.  I am always worried about people drifting away simply because I can’t see them or it’s semi-depressing hanging out with me because I don’t feel well or make plans and don’t follow through.  Chronic illness is a part of the daily life of one that is chronically ill.  To avoid talking about it at all, is leaving out hearing about that person’s reality.  Many chronically ill want to process their experience.  However, it is also good to give them a break from that reality and make them laugh or reflect on shared memories.  Think about their abilities rather than disabilities.

    Many chronically ill are housebound.  I am also fortunate not to be housebound, but it’s best to have a low impact activity that does not involve eating.  I can’t imagine the isolation one feels when they are housebound and no one comes to visit and all day every day they are in pain.  Nobody asks for that kind of life.  This leads to depression in the chronically ill.  The loss of ability, adjusting to medical treatments and lack of social support lead to about 1/3 of people with chronic illness facing

    Social support for the chronically ill not only relieves depression but helps one to physically feel better.  Better meaning not as bad as they could.  Studies have shown that people who have social supports are more likely to follow doctor’s instructions – perhaps because they see more purpose in life – by doing the following:

  • Keeping doctor’s appointments
  • Monitoring blood sugar and blood pressure
  • Taking their medication
  • Getting regular exercise
  • Eating healthier food

Finally social support can ease the day-to-day tasks for those with chronic illness.  Something that seems like an annoying task to a healthy person is not just annoying but hard work and sometimes even painful or impossible for those with chronic illness.  For example, house work, childcare or grocery shopping.

I am very fortunate to have a wonderful partner and a supportive friends.  Today we planned a get together for in a few weeks at a cafe, but I worry that maybe I won’t feel well that day.  Maybe I won’t be able to go to an event that I plan.  And what if I can’t – will my friends drift away?  I hope not.

Two articles that I used in writing this piece

Family and Social Support for Chronically Ill
http://www.jhsph.edu/research/centers-and-institutes/johns-hopkins-center-to-eliminate-cardiovascular-health-disparities/about/influences_on_health/family_social_support.html

Depression Caused by Chronic Illness
http://www.medicinenet.com/script/main/art.asp?articlekey=55170

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