Why support groups?

Early on in my diagnosis, when I was much sicker, I inadvertently offended someone who told me how good I looked.  I was upset by their disapproval of my honest response.   I let the situation isolate me further because I then found it difficult to share with others what I was really going through.

For a variety of reasons, I found that with each passing year, I needed a little more emotional support than what I was able to receive from my family and friends.  I suspected there were others in the same situation.

I have since discovered on-line communities offering support on websites such as  Facebook and WebMD. I found support groups that met on the phone and in person.  It confirms to me that I was right.  It also shows me that support is crucial to our emotional well-being.

Some people are blessed with family and friends that genuinely understand what they are experiencing and are a tremendous support to them.    If you have people like that in your life, treasure them.  They are a rare gift.

Others find support from their church.  The prayer ministry I am a part of was a huge support for me.  The pastor in charge prayed tirelessly for me.  Some of the members listened to me, encouraged me, and prayed for me. I am sure that it was the many prayers that sent my kidney problems into remission in record time.  The rheumatologist marveled over my progress in that area for several years.

A support group specific to the issue you are dealing with can offer  benefits not usually found in normal daily life.  What makes support groups unique?

  • they verify that you are not alone in your struggle
  • they urge you to press on
  • they give valuable insight on the disease
  • they give valuable resources as to treatment possibilities
  • they give suggestions on how to make life easier with the disease
  • they give opportunities to make new friends, ones that understand your unique situation

It does take effort to attend a support group. You may not feel well enough to attend every meeting.  Do what you can, but keep in mind it is well worth the effort. If you are not thoroughly pleased with the group and how it is run, decide to be a positive influence and help guide it in a more positive direction. Although you may feel pretty good most days and not need a lot of support; there is probably someone there who  can use your encouragement.

Being in a support group has taken away my feelings of isolation.  I know I am not alone in my daily struggles with lupus.  What was the offending remark I made many years ago and have hardly ever said since? “I wish I felt as good as I looked.”   If that situation happened today, I would  chuckle with my support group about it and about how good we all look.

Until next time, many blessings to you and your support team. Leslie Rose K

If you are following along in our book Coping with Lupus, Dr. Robert Phillips, Ph.D agrees with me. pages 184 & 185

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The greatest discovery of my generation is that a human being can alter his life by altering his attitude. -William James

leslie@dominateyourdiagnosis.com

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4 responses to this post.

  1. This is a great thread Leslie! Because I was in those same shoes, being told I looked good, people trying to understand where I was coming from but couldn’t because they just didn’t understand in the right way-how can you understand exhaustion and pain that we have if you are not experiencing it yourself? But once I found our support group, I felt like I had found home!!! I got the validation that I wasn’t loosing my mind, that exhaustion and pain were real!! I know that we miss some of our meetings, it is just the way it is sometimes, but I always miss that fellowship with “family” when I miss my meetings. The support group is a lifesavor and to worth it!! Thanks for an awesome post Leslie!

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