Steve Ariens, PharmD.
When a patient is diagnosed with a particular disease, or group of diseases, they are mostly interested in how the disease is going to affect their quality of life.
Some diseases, like Alzheimers, Lou Gehrig’s Disease, and certain cancers, the change in the patient’s quality of life is pretty certain, as is the outcome. The only thing that is not certain is the time between being diagnosed and the final outcome of the disease.
Other diseases, such as Fibromyalgia, Chronic Fatigue, Chronic Pain, and Crohn’s disease… especially in the early stages of these disease, the patient’s quality of life can take fairly large swings.
Those LARGE SWINGS often means that the patient becomes highly unpredictable, in them being able to make scheduled meetings, parties, gathering with family & friends.
After numerous “no-shows” at scheduled activities with family & friends – because the patient’s disease state is in a “flare”… friends and family stop scheduling activities with the patient. Often, because of these mis-activities, friends stop calling… many will just “disappear” from the patient’s life. Family just schedule activities without including them. All to often spouses become distant and/or end up divorcing.
LONELINESS … the side effect that few talk about.
About two years ago, a woman that suffered from numerous chronic conditions decided to create a methodology to help those suffering from this side effect and the non-profit group www.livesupportgroup.com (LSG) was born.
Live Support Group (LSG) created an online support group for those who are suffering from chronic disease(s) and are limited from leaving their homes on a part time or full time basis.
People can connect via phone, tablet or computer to the three weekly meetings. (Monday, Wednesday and Saturday). There is no charge to the participants, they only have to register on the LSG website to get a email sent to them with a link to the specific meeting. The meetings are totally anonymous, using only first names.
On several occasions, LSG has had special guest physician speakers who will spend 60-90 minutes answering specific questions from the participants during the meetings.
The fact that the LSG is getting ready to celebrate its second anniversary, strongly suggests that people who have (and continue to) participated have benefitted from the peer-to-peer support.
Steve Ariens is a retired pharmacist who shares his thoughts about chronic pain from the perspective of both a pharmacist and a husband whose wife suffers from chronic pain.