MS and Caregiving: #100outof100

Dr. Phil shocked many viewers this past spring when he stated that “… 100 times out of 100 this won’t work” if partners care for partners with disability.

Whoa. It’s painful to even read that sentence, isn’t it?

Many of you watched the episode or heard about the comment and had a strong reaction. To open up the conversation about MS and caregiving on the MultipleSclerosis.net Facebook page, we posted an article by Dan and Jennifer Digmann that was a response to Dr. Phil’s inflammatory comment. More than 100 of you Continue reading

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Creating the Support Network I Want

By Stacie Prada

Living with a chronic and progressive illness like MS includes living with fear, pain and diminishing abilities. It’s rough.  It can make me grouchy and impatient. But it’s not a pass to treat people poorly. It takes more effort to be appreciative and pleasant when I’m tired and feel crummy, but it’s a tremendous life skill to cultivate.   Sometimes I succeed, and sometimes I fall short of my goal.  When that happens, I follow up with that person and try to repair any damage.

I’d rather people support me because they want to be there with me.  If someone is helping me solely out of obligation or pity, their resentment or condescension will come through in every interaction.  No thank you.

Feeling like a burden isn’t helpful to anyone’s physical or mental wellbeing.  And being treated like a burden isn’t fair.  Every person has challenges and limits, and we all have needs. Needs aren’t weaknesses. Some of our needs are just more visible or less common compared to what’s thought of as normal.

My best relationships are those of mutual admiration and appreciation.  We help each other often, but we make sure we respect our limits so that nothing is done with resentment.

I’ve put together some guidelines for myself to build healthy and positive relationships:

  1. When people show kindness or concern, accept it graciously. If I discourage it because I’m embarrassed, grouchy or feeling like they’re being pushy, they’ll eventually stop asking or providing support.
  2. Notice when I feel better about myself after interacting with someone. Put extra effort into connecting with them.
  3. Notice when I feel worse after interacting with someone. Consider possible reasons, and be honest about whether it’s me or them. See if there are ways to improve the relationship.  Let it go if it’s not a critical relationship. Pursue sincere conversation or counseling for the relationships I’m not willing to let go.
  4. Know that letting go of some relationships will be necessary for my health. This is really tough. Try to wish them well and move on.
  5. Be a cheerleader for others. Share in their joys and accomplishments genuinely and without jealousy, and express sympathy and encouragement when they’re having a hard time.
  6. Be willing to accept help. I’d love to be completely self-sufficient and strong, but refusing help pushes people away. Remember accepting help might make them feel better too.
  7. Grant people grace when they periodically commit a friendship blunder. Hope they’ll do the same for me. People will never respond perfectly in every situation, and anyone expecting perfection is being unreasonable.

Striving to follow these guidelines has improved my relationships immensely, and it’s created a positive support network that I can count on when I need it. We support each other and don’t keep score. Having them around makes every challenge easier to tackle and every loss more tolerable to accept.  Plus, the effort I put into adding positive energy in the world helps me feel I have value and just plain feels good.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/ 

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