One of the most beautiful qualities of true friendship is to understand and to be understood — Lucius Annaeus Seneca
When a friend is diagnosed with a serious condition, such as multiple sclerosis (MS), it is human nature to want to do something to help. But we often don’t know what exactly to do. Here are suggestions from members of the MS community.
“Just be there.” — Ebonie
Many friendships evolve over time, but the best friendships adapt to change. The most important step you can take to help your friend living with MS is simply to continue being there for them. Keep being their friend in the face of uncertainty and change. Show them that you still care. This was the number one suggestion from people living with the disease who responded to our online inquiry.
“Be understanding if I have to cancel plans last minute due to fatigue.” — Jodi
People living with MS can easily become isolated and lonely. The unpredictable nature of the disease makes it difficult to make and keep plans. Although your friend may have scheduled to have lunch with the girls and had to cancel at the last moment, it’s extremely important to include her next time and the time after that. Consider ordering an extra meal and taking it to her at home; then spend some time catching up on all the gossip. Or offer to do so at another time when your friend is less fatigued or experiencing fewer symptoms.
“Listen with an open heart.” — Cathy
Both of you may be confused about MS and not know exactly what is needed in the moment. One of the most challenging things, I believe, about showing support for another person is how to express empathy. It’s very easy to say: “Oh, I totally understand; I get that too.” But let me tell you a secret. This type of response ranks very high on the what-not-to-say list of unhelpful comments for anyone living with a chronic disease. A fabulous thing you can say instead is: “I don’t really know what it’s like to live with MS, but I’m here to listen and learn.”
“Learn the basics of the disease.” — Rob
Multiple sclerosis is strange. It’s a disease with so many symptoms that no two people experience it in the exact same way. For some, it can be progressive and never really get better. For others, it is cyclical in nature with relapses that may resolve partially or completely. MS always remains unpredictable. It is incurable, but there are treatments, therapies, and lifestyle approaches that can help to preserve quality of life.
“Don’t give me medical advice.” — Angela
Since there are so many different symptoms and treatment approaches, it would be difficult to know what would be the best medical approach for any one patient. Unless you are a medical professional who specializes in multiple sclerosis, avoid giving medical advice. Unsolicited advice often interferes with the ability to connect and support one another.
A word of caution regarding reputable sources of information to learn about MS and its treatments. There are several MS organizations that provide wonderful resources online and in print. Stick to those for general MS information and the latest news. It can be difficult to distinguish between eye-catching headlines and real breakthroughs in the media. Avoid asking your friend if they have tried the latest craze when it comes to treating their disease.
“Tell me corny jokes and make me laugh so hard my stomach and cheeks will get a serious workout.” — Marylou
Seriously, laughter can be the best medicine. Spend quality time just goofing off and enjoying each other’s company. Just because MS is in the picture doesn’t mean that you or your friend have changed who you are deep inside. Have a good time.
“Pray for a cure.” — Kim
Research to reverse the effects of MS is ongoing, as is research to improve quality of life. What a “cure” means is different for each individual, but it is something for which many of us living with the disease are hopeful. Show your support by donating to research or helping to spread awareness.
“Try to be here for me when I need (you)!” — Jedlicka
There may be times when your friend could really use a helping hand. Picking up groceries may be helpful, particularly if your friend experiences sensory overload in public places. Offer to help prep food for the week, as MS can sometimes make it much harder to accomplish even seemingly simple tasks. Be willing to listen through the tears on occasion. Just as the physical nature of MS can be cyclical, so can the emotional side of the disease.
“Just say ‘Hi’ and see how I am.” — Susan
Check in on occasion. Please don’t presume that your friend isn’t interested in connecting if you haven’t heard anything recently. It may be that they are waiting for you to reach out, or they’re too busy dealing with the effects of the disease and/or balancing normal obligations of everyday life. Or maybe your friend doesn’t want to feel like a burden. It can be hard to feel dependent upon others. Pick up the phone or drop by; nothing says more that you truly care than keeping in touch.
“Keep being my friend.” — Dawn
The most important thing that your friend living with MS needs is for you to keep being their friend. Life is filled with uncertainty, and having goods friend alongside for the journey helps all of us get through the tough times with a little more ease.
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Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.