Feeling physical, emotional or mental pain is consuming and draining. Having a positive attitude toward the different burdens and challenges of life isn’t easy — at least not for everybody. Sometimes, you can’t but be focused on that pain.
After my daughter, Lynn, was diagnosed with erythromelalgia, I got random advice from people — some good and some not so good. It’s during such challenging times that you truly learn who really loves you and wants to support you. And don’t be shocked when suddenly your circle of friends and family shrinks and gets smaller with time. To the people who truly want to be supportive and helpful, but might be at loss of words or ideas, I say this: Measure your words and actions wisely and sensitively.
The most provocative of all the advice given to me is when a friend or a family member has nothing to say but “count your blessings” and then silence. Another one is “be grateful” followed again by silence. That’s it! Seriously, that’s your big advice!
You can’t just drop those words on a person who was just diagnosed with a rare disease. You can’t say that to someone terminally ill. And certainly not to a mom of a special needs child who is having a huge meltdown in the supermarket.
There has to be something more appropriate to say or even do. The awesome people who have been supportive to Lynn and myself inspired the following tips. They’re our blessing and to them we are grateful.
1. Be sensitive when offering advice. Let it be meaningful and out of your own experience and not just a repetition of clichéd words.
2. Be patient enough to learn how to become one of their blessings.
3. Be their advocate. Be informed and learn about whatever they’re facing.
4. This is about their pain. Don’t belittle it. Acknowledge their pain, and please, just please, don’t try to convince them that you or someone you know has got it worse. This isn’t a competition.
5. Sometimes the least you can do is be a listener, or you can just offer them a shoulder to cry on.
6. Don’t give up on them even when they don’t answer your calls or texts. Keep trying. Let them know you’re thinking of them.
7. Offer your skills. Cook for them, babysit their kids, drive them somewhere, be with them at their next doctor’s appointment or do their supermarket shopping. Never underestimate such small acts of kindness.
8. Allow them to grieve and when the time is right, help them take a step back to have a different perspective. When someone is aching, they’re mostly focused on that pain and it’s a vicious cycle that creates more pain. You can offer to take them out or bring up something new to their attention. Be a distraction.
9. Offer them a gift, no matter how small or symbolic. Everybody loves unwrapping gifts; it’s guaranteed to put a smile on their face. Maybe you can even write them a poem or dedicate a song to them.
10. Show them that their pain doesn’t define them by making them feel useful and important. Involve them in your life by asking them for their opinion or advice.
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Lead photo by Thinkstock Images
I am a blogger, philanthropist, public speaker, an agriculture engineer from the American University of Beirut, and proud mom of Lynn & Lara. My blogging journey started in 2016 after the diagnosis of my eldest daughter Lynn with the rare disease erythromelalgia. Since then, I made it my mission to spread awareness, help others get a diagnosis and encourage research to find a cure. My focus is on a community and digital campaign called the #RedHandChallenge to create awareness in addition to supporting other individuals and families dealing with rare diseases and inspiring them to positively overcome the daily challenges associated with a rare diagnosis.
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