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Readers Respond: What Should We Say to Help People Newly Diagnosed with MS?

Responses: 21

By

Updated June 10, 2009

We all went through the process of being diagnosed with multiple sclerosis and living with the idea of our new MS status in those days right after getting the official news. Most of it was a blur, I'm sure, but I'll bet all of us have a couple crystal-clear memories of people who said just the right thing in just the right way. Share those moments with us here, so that we can all be better prepared to support others who have just found out that they have MS. Alternatively, let us know what you wish someone would have said during this time to ease the transition into officially being a person with multiple sclerosis.

im prayerful

Everything started for me in jJanuary. I had recently loss my mom in December and one day could not move. They told me I had a stroke until recently. weakness on my left sde,blurred vision, falling and not wanting to talk now cause I cant speak to well. I was such the go getter a fun person before all this.Now im in a wheelchair.My doctor say she is pretty certain that I have MS but I see the neuro on the 27.
—Guest tlove

scared and tired

I have been recently diagnosised with MS, I will shortly be 31. I am scared, I am a nurse. I take care of patients with MS actually. I have so much pain and numbness to just one side of my body. Some days I want to lay in the bed and give up. Reality is that I will not be able to work eventually and wind up as the patients that are bed ridden that I take care of. Scared of being crippled, but I have to fight. My reason, a 8 year old boy who only has me. But theres is no words to describe waking up hurting or waking up not being able to move an extremities. I can't say positive things nor can I say negative things. I can only say I am trying to survive, physically and mentally.
—nurseli

So... what DOES one say?

I have a daughter who developed optic neuritis the week before her 16th birthday and was later diagnosed with MS. Now, 15 yrs later, another one of my lovely daughters has optic neuritis and other symptoms of MS. My mother also has MS. I know I'm saying the wrong things because I'm bouncing all over the place... from despair to optimism, and each of my daughters seems to be handling her experience differently and seems to need me to react differently. My inclination is to 'fix' it, and to make it even more complex I'm a nurse and my professional experience with MS sometimes gets in the way. Where's the line between caring and controlling? Suggesting and meddling? Standing back to allow them space to make their own decisions, and apathy?
—Guest Stacey

Just being diagnosed - my main concern

I've just being diagnosed. I'm fine like. Forgetful, clumsy,tired but I've been a complete clutz and scatterbrain all my life do no change there! I haven't bothered telling my elderly parents or most of my siblings (parents live in another country a few hundred miles away). I think my poor mother in particular would stress so much shewould wreck my head worrying (and my siblings) so I prob won't tell them unless I need to. My friends i've told have been fine (I'm single) but you are right, a lot of people go 'sure I know someone with it and they are fine, just off work sick the odd time'. I can't explain to them it is the being off sick that worries me. I live in alone in a big city (ok near lots of friends) big rent and I had just given up my sensible well paid full time job before I was diagnosed. Oh and I have no insurance / haven't bought a house. It is all this stuff that worries me but can't voice it. Being alone, disabled, no career and broke in a big city. That's what scares me
—Guest Guest Red

sondrak

well, i think i will just go fishing Tuesday.. worms work best for me
—Guest sondrak

SCARED

DONT KNOW IF I SHOULD GET A SPINAL TAP I HAVE A CHILD THATS 9 YRS OLD AND MY DOC WANTS ME TO BUT IM A SINGLE MOM I DONT KNOW WHATS THE RIGHT THING TO DO I WANT TO KNOW BUT THEN I BEEN HURTING FOR SO LONG I JUST DONT KNOW WHAT TO DO
—Guest M4

Attitudes AFTER Diagnosis is Crucial!

When I was newly diagnosed, I handled the emotions I received from others easily, including the confusion, sympathy, glass half empty for me attitudes. I felt like my family was entitled to whatever emotion the "shock of the news" gave them. What I had the most issues with was their attitudes in the months after I was diagnosed. I made the decision that I was going to "LIVE" as much as I can, but I was still in a lot of pain! Everyone interpreted that as I was "fine", and they expected me to still push on as I had always done. They didn't understand why I couldn't handle loud noises without getting confused or why my patience was shot, and attributed it to me being in a bad mood or being selfish. The result was that I felt extremely overwhelmed and helpless. I didn't focus on my reaction to the illness, because I focused on making sure everyone else was happy. Always try to be understanding, even if you don't feel that way. #! tip: Learn the symptoms. It makes a huge difference!
—Guest Chelsea

My Boss was a Non- sympathedic B*TCH

I was working the job of my life. If u asked who or where I was...EVERYONE in the ONLY Southside TRAUMA Hospital new ME. The tragedy hit me. I went into work in the ER and had one of my doctor buddies check me out. I wanted to know why I couldn't feel from my waist down. After I was diagnosed and treated at home with IV steriods. I returned to work. Well. I had more symptoms rising up in me. Vertigo. Leg weakness swallowing therefore tongue problems. My boss took me into the office and told me `you need to get over this and get on with your life”. I vented very loudly and aggressivly and told her to shove the job
—Shrese33

I am sorry to hear that.

I think we should first say, "I am sorry to hear that". Then I think we should listen, listen, listen.
—Guest Carol Rocha

ms

I was diagnosed with ms 2 days before my 36th birthday. Took me 3 wks to tell my husband . And till this day he doesnt understand what i go through. My kidz are sort of in denial . What else can i do or say to them?
—Guest Wanda Guzman

what I say to anyone with MS

So You have MS! There is no rhyme, no reason, no cure, GET OVER IT! Get on with your life! Try to be happy person! and Not be miserable to the people around you or you will end up alone as no one will come to see you!
—Guest Pepsi789

God knew all along

When I was diagnosed 13yrs ago, I received a letter from an old friend who told me that she was saddened and shocked at the news but comforted in knowing that to God, my diagnosis was no surprise. He knew all along that I would be going through this trial and that He was with me to get me through. I have used that when 'helping' others who I know to have at least some faith in God.
—Guest Tracy

Everyone is different

For years I suffered with incontinence and vertigo. My doctor treated me for each thing but not until I fell 2 more times and wound up breaking my glasses and developed double vision was I diagnosed with MS. My Pastor visited me and told of the story of his sister who regained her sight after going completely blind when she was diagnosed and then went back to work (she was 50 yrs old), it gave me hope. I was 67 when diagnosed. Thank goodness my husband and I are both retired. Our children are grown and gone and we only have each other to take care of. He gives me my injections. I volunteer at my church and 2 retiree groups. Other than being tired sometimes, I just feel old. I know there are people worse off than me, but I feel very fortunate. I don't know what's to come, but I live one day at a time. I still have hope.
—Guest Margaret

Living inside my head

Psychologically, the worst thing that I did right after diagnosis was to live almost entirely inside my head, to become totally focused on me and the bad news I had received. The person who pulled me out of that funk was my then four year old son (he is now 24, and still as beautiful). While I was lying on my bed dwelling on the awfulness of my fate, he came in and lay down next to me and said, "You are the best daddy in the world." The relief I felt was enormous and indescribable and he reminded me that I wasn't living just for myself, that I had responsibilities to him, my wife and other kids, and that life goes on. Whenever I talk to people who are newly diagnosed, I try to tell them that life continues, that they have to get on with it and that with a little support they will figure it out.
—Guest Andy B

MS

Well, my father also has MS and yes it is very hard to live with it but you just have to keep going with your life and don't let it stop you. I grew up with my father having MS and he couldn't play with me or nothing! He was diagnosed with MS when I was about 5 years old, and i realy don't remember him playing with me or running at all. Well MS is very harsh. When my dad was diagnosed he could not walk he had to use a wheel chair, and he was starting to loose his eye sight! Its been a while and my dad is very much better! he's walking with his crutches no more wheel chair. So what i'm trying to say is DON'T GIVE UP!! just get on your feet and fight it! my dad did and he's doing great. Thank you for reading!!
—Guest Mary Marquez
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