What to say and do to help a friend or loved one who has Multiple Sclerosis (Part One)

Hi,

My sister was diagnosed with MS about eight years ago. At that time I failed to understand what that meant. I am grateful to say that I was able to be empathic, not sympathetic, even when I didn't understand. I immediately began to gather as much information as I could about the disease so that I could understand as much as possible. Again, I am so grateful that I have the type of personality to gather information so that I can be there as a support person for my sister -- who is my own heart. I realized early on that it was absolutely vital to let her direct the conversation. If she wanted to talk about MS, we talked about MS. Often I was able to give her insights into what was happening to her body. (She is not an information gatherer, so I read and then pass it on to her.) She has told me that she appreciates the fact that I do that and share it with her in terms that make it easier to understand. Her depression in the beginning was so terrible I thought we might lose her.

However, I kept loving her and hanging on to her and she was able to emerge from that terrible depression with her faith not only intact, but growing, and her optimism in place.

She has walked a difficult path in the past eight years. She also is a breast cancer survivor. There's no information available about the effects of chemotherapy on a person who also has MS -- I searched and searched and talked to medical personnel. But, again, we walked through it together and she is such a source of inspiration to me because she has learned that some days are good days and some days simply are not. And she walks through it one day at a time. I walk with her, laughing sometimes, crying sometimes, but always living, living, living...

I've told her about this forum and am hoping she will get on because she has so very much to give about the process of learning to live with MS and she does it with dignity, grace, honesty and love. And I think this would be a safe place for her to get more information from those of you who truly understand from the inside. I think anyone who deals with this insidious disease on a daily basis has to be incredibly brave and strong of spirit. I am amazed by you all.

Thanks for giving me this place to see your hope and your strength.

"I don't really know what it feels like, but I believe you when you tell me how you feel."

"Only you can know what it's like for you, but I'm hear to listen and talk about it if you need me."

These words have provided validation and empathy to me during trying times.  That little bit of understanding and support goes a long way to relieving some of the stress of living with this unpredictable and infuriating disease.

I was on the phone last night with a dear friend, listening to him complain about some of the problems he was experiencing with his MS. 

All I did was say, yes, I understand, I hear you......And let him talk.

And when the conversation was over at 2 am I told him I loved him. I cannot say more than that. 

No, I don't understand what he is going  through. But I am his friend, and will offer support and love. And that is all i can do. 

Right after I was diagnosed, a very good friend said the BEST thing anyone has said yet. When I told him that the doctors had decided that it was MS, and he said "Wow, that sucks" and then gave me a hug. Until then, it seemed like no one was being truthful. They all had empty eyes and muttered "I'm sure it will be okay"s. But this guy was honest and straightforward. He told me the truth, and wasn't afraid to do so. It made me feel like a human again, and not just a patient.

This is spell binding. All the things I would like to do, put down in words as I could never do.  You spell human needs out, how we all want to be treated not only with MS but each of us, for all of our lives. It's a perfect recipe for love and living, friendship.

You are very sure and very right.

Sometime a person had built a very high and thick wall around them and only persistent caring, doing these things you list, can hope to reach inside. Once done, the reward for yourself is finding a spectacular friend. Sometime we fail, because we forget, or seem unable to do these very things.

It really depends the situation. I don't mind when acquaintences don't know what to say. I usually like to give just a quick explanation of MS and then try to put them at ease by changing the subject, unless they express the desire to discuss it further.

Friends and family? That's different. I really appreciate it when they ask how I am and truly mean it. My 20-year old daughter gets high praise from me in that department. She never fails to ask how I'm doing. She listens to my answer and asks follow-up questions. I cherish that. She makes a point of showing me that she cares, and I couldn't begin to explain how much I appreciate it.

Most of the time, I just concentrate on making the other person feel at ease, and take my cues from them. Hmmm... that sounds topsy turvey, but I'm sure it's the case with a lot of us!

It really depends the situation. I don't mind when acquaintences don't know what to say. I usually like to give just a quick explanation of MS and then try to put them at ease by changing the subject, unless they express the desire to discuss it further.

Friends and family? That's different. I really appreciate it when they ask how I am and truly mean it. My 20-year old daughter gets high praise from me in that department. She never fails to ask how I'm doing. She listens to my answer and asks follow-up questions. I cherish that. She makes a point of showing me that she cares, and I couldn't begin to explain how much I appreciate it.

Most of the time, I just concentrate on making the other person feel at ease, and take my cues from them. Hmmm... that sounds topsy turvey, but I'm sure it's the case with a lot of us!

It helps

Merely Me  loves getting the point across..Like an arrow reaching the bullseye.

I really like the way she writes and have received much feedback from others on her ability to shadow the thoughts of others (her peers).  Intelligent and a step ahead of the questions that loom on the horizon by many with MS... -- My thanks to all for allowing Merely Me to express herself.

Sincerely,

Stuart