What to Do When Loved Ones Don't Understand

Losing control of your body from multiple sclerosis can happen in a devastating series of losses over many years. But when your friends and family aren’t there for you, it’s a whole other kind of loss.

Sometimes loved ones don't understand MS

What do you fear most - physical decline or abandonment? The decline would come as no surprise, and there are things we can do to manage it. Rejection from a loved one can leave us feeling betrayed, helpless, and unworthy. But there are ways we can weave a thread of connection with those we care for. Not all relationships can be salvaged, but we might develop a deeper, more authentic sense of connection with those that stay in — or come back to — the fold. Following is a compilation of thoughts from three bloggers with chronic illnesses.

Talking about MS with friends and family

From the group blog called WE ARE NONE OF US ALONE, We are Connected, is a list of suggestions for how you can manage sharing the news of your diagnosis and how to decide who to talk to from that point on:

  • Put an end to family secrets. Don't try to protect your friends and family from bad news - communicate directly and openly with family members.
  • Include your children. Even though their understanding of the illness may be limited, children appreciate being told what's going on around them. Otherwise, children may believe that they are the cause of the serious illness or other events around them. Be open and honest with them, and allow them to ask questions.
  • Be clear about how friends and family can help you. People love to feel useful, so don't be afraid to ask for help or favors.

Tips for communicating with loved ones about MS

Patient advocate Toni Bernhard, JD, shares four tips to help you communicate more skillfully with loved ones when chronic illness becomes an inescapable part of your life.

  1. Get help from a neutral third party. Often the best way to educate family and close friends about your diagnosis is to use a third party source because it takes the emotional component out of the equation.
  2. Write a letter. If loved ones are not being supportive even after you’ve tried to educate them about your illness, write a letter to them.
  3. Find non-illness related subjects to talk about. I had to learn how talk to others as a person with a chronic illness. At first, I assumed my family and close friends would want to know everything about my illness. Now, I ask about their lives and talk about new interests that I’ve developed. It provides all of us with a much-needed respite from thinking about my illness all the time.
  4. In the end . . . accept their limitations. Some family and close friends may never accept this change in your life. The best way to protect yourself is to cultivate compassion for them. If you can learn to wish them well despite their inability to support you, you can free yourself from the mental suffering that arises from your desire for them to be different than they are.

Those who don't understand the impact of MS

Last on the list is patient advocate Ilana Jacqueline, who wrote a blog for the Huffington Post in which she lists some nuggets of wisdom about loved ones that don’t understand:

  • No one is inherently evil and out to get you. People either understand or they don’t.
  • People change. Someone who might not support you today could reach out and learn how they can be a better relative tomorrow.
  • You can’t ask anyone to love you until you love yourself (sick, healthy or somewhere in-between).
  • Family comes out of the most a$$-backward places, and people you might have never imagined even being friends with may one day offer you the most life-altering compassion.
  • Not everyone is meant to be in your life. You’ll know who when the relief settles in an hour after you’ve blocked their email and changed your number.

Compassion for yourself and others

And Ilana’s final thought: A well-lived life is the best revenge.

A common thread through all those contributions is the notion of developing empathy, understanding, and patience for those able-bodied people who can’t get on board with the idea of chronic illness. I always try to remind myself that I was once one of them prior to 1998, and I felt then exactly what they do now. People who have had the compassion to give have always given me a gift I can pay forward as well, and I have.1-3

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