What was your reaction of the MS diagnosis?
As many of you know we run a Facebook page which focuses on multiple sclerosis called MultipleSclerosisTalk. You can join it by clicking here.
Obviously there are loads of uses for such a group as the whole topic of MS is very wide. People with MS use it to vent or ask questions.
Indeed one of our members asked the following question last week. “What was your first reaction to the multiple sclerosis diagnosis?” So we thought we would share it with the other members of MultipleSclerosisTalk. I have to say the results of the discussion that ensued were fascinating so we thought we would share some of the comments with you and ask you to share your story.
The most common reaction was tears. Jennifer told us “I bawled my eyes out because I was scared of the future, I was relieved to know there was a diagnosis which wasn’t terminal that made sense and finally a doctor listened to me to investigate the cause of all my medical issues.”
” I cried. My doctor asked me why I was crying. I angrily said, “ why am I crying?” This is wheel chair bound. Then I sat down, and cried a little more and she explained that it didn’t necessarily mean that at all, and the rest is history. I still work full time, but do feel the impact as the years go by. My doctor said I am very resilient. I told him, not sure to take that as a compliment or not. I know that I will have to leave my 29 year career as a truck driver within the near future, but God Willing, I will find a more grounded job. Life goes on. I do cry a lot at home, feeling scared of the outcome, but then I kick my self in the but and carry on. I am one of the lucky ones.” was Louise’s reaction.
Crista “was in the ER and I cried because I thought it was a death sentence. All I could say was, I can’t believe this is what I’m going to die from. Then “aha” because this explained the brain fog and fatigue and long naps.” So more many at least they can now explain the symptoms.
Salkly’s approach was different “My mum was with me and my first reaction to her was ‘why are u crying it won’t change anything’ and I have had the same outlook all along. I made a pack with myself on te day to love my life. I have gone back to work took my daughter to disney land done 46 mile bike ride and much more to make sure i remain sane xx”.
Fear is not uncommon of course. ” Fear!!! Still is. Not knowing what tomorrow holds. I now just received a diagnosis of lung cancer and I have NEVER smoked? Having surgery in two weeks to God willing to get rid of that and will continue my battle with MS. I am so blessed and I remain positive in my resolve to beat anything thrown at me!,,” said Gloria.
The understanding of the root cause of your symptoms was backed up by one reader who shared “1st was scared cause the nuro was looking at my MRI right in front of me and I could see all these little spots everywhere and was freaking out. Then relief cause it gave me an answer to everything that has been happening to me for 6yrs.”
For some the diagnosis is a relief because of this. “Happy. That sounds weird but the first docs believed it was my breast cancer metastasised in my spinal cord. Beyond the help of chemo I was given a death sentence. MS was great news at the time” was Susan’s comment.
And Randi said “Relief. Thought I had a brain tumor.”
Tom described the shock when he shared “Sat there dumbfounded, numb and speechless….thought for sure I had screwed my back up again and had no inkling or idea I was gonna get that diagnosis….”
Depression is a common reaction. As Jonathan shared ” I was depressed. Thought it was a death sentence. But I educated myself and have a great support system.”
“Anger then more anger and 15 years later acceptance.” was the reaction from Brandy.
Pamela was very practical ” Had my hubby repeat marriage vows so he knew I wouldn’t let him down. Didn’t even think about it. In this together forever.”.
I have to say that many of us would have sympathised with Athena when she said “What’s MS?”
So you can see there are a pretty wide range of emotions. From anger to working out how to “get on with it”.
For the next part of the discussion we would love to hand the podium over to you. Please feel very free to use the comments section to answer the question “What was your first reaction to the multiple sclerosis diagnosis?”
It would be great if you could comment on the reactions of others and even better share a few of your favorite tips for dealing with a diagnosis of multiple sclerosis.
Many thanks in advance!
My first reaction was,… “Well that makes sense” My younger sister was diagnosed when she was around 20 yrs. old… She lived with it for 23 yrs.. ( she passed away 3 yrs. ago) When she was diagnosed, they said MS is NOT hereditary.. I watched her struggles but never thought that I had it also, My first episode was less than a year before she died, Her reaction was,… “Oh My God… I hope you don’t have MS too!!!” (I had lost my central vision in my right eye) 4 yrs. later .. (7-11-16) came my diagnosis!!!
I was relieved for my diagnosis. This may sound weird, but it validated how I was feeling and that my pain and weakness was real. I no longer had to convince people that I was sick and not faking illness. My family doctors are no longer seeing me because they wanted me to see a psychiatrist and I told to them to go see one themselves. Now I live my days based on how I feel.
Ugh.. one of my symptoms is issues with language processing. The word is ‘busy,’ not ‘buys,’ and “Life ISN’T about getting to the end……”
Well, having two older siblings who had already been diagnosed years earlier, I knew what it was before I had a diagnosis. One of my siblings is in his seventies, and you’d not know he has it if he didn’t tell you – the ‘best case scenario,’ as he’s had it for nearly forty years. The other is in her sixties, wheelchair bound, has had several strokes to complicate matters, and so has become the ‘worst case scenario.’ I’m a single mom of two adult children, and early retirement is simply not an option; I’m my only means of support, and I’m going to need that retirement income. That means I still need to work for nine more years. Initially, I was afraid of being unable to care for myself and my closest family being a fifteen hour drive away. I soon realized, however, that the date on which I was diagnosed didn’t change my life. I was still me, still the same job I love, still with my closely-knit group of supportive friends; there was no line drawn that signified, “From this day forward, your life will be a living hell.” I went for years without anyone knowing other than my family and closest friends. I think that’s important for people to know. There are several kinds of MS, and even if two people have the same kind, there is truly no predicting whose will get worse and whose won’t, whose will progress more quickly, etc. I decided I could cry and feel sorry for myself, or I could get back to living and take each day as it comes. I chose the latter. Yes, the symptoms have gotten worse – and sometimes it seems that new ones show up daily, but you know what? They’d show up if I was sitting at home feeling sorry for myself, too, and it’s much healthier physically, emotionally, mentally, and spiritually to live life as fully as possible. If you’re my age, you probably were told when in trouble as a child, “Just wait for your father to get home!” Did we wait? Heck, no! We went and kept ourselves buys and hoped that Mom would forget to tell Dad! I take the same approach with my MS: I’m not going to just sit here until it has me completely disabled. I’m going to live as much as I can. I think it’s a Maxine cartoon that says, “Life is about getting to the end in a well-preserved youthful body; it’s about sliding into home plate having given it all you had right up until the end.”
At first, DISBELIEF, and then JOY! I finally had a reason for alI the symptoms I had been experiencing for years and in reality it had nothing whatsoever to do with my ‘cycle’!
My MonSter finally had a name and its name was MS!
I am 28 years old now. Diagnosed almost exactly 12 yrs ago in June.
When the diagnosis of Multiple Sclerosis finally was verified, it was a relief as it finally reaffirmed that I did have something wrong with me. I had gone for years of symptoms and supposition from one doctor to the next only to be told over and over there was nothing wrong with me. At that time I had seen MS up close with my mother I just knew. That was twenty-five years ago.. With good care and perseverance on my part, I am still walking and with outside help live in my own home.. It has been a long road to travel but I am in a good place in my life with my house, location and healthcare providers.
At 67 years of age, I am doing much better than many others much younger than me.
My first reaction was disbelief. Hearing my neurologist tell me I have ms felt like something that only happens in movies or to other people but not to me. A day later I cried like a baby for hours. I was terrified. I was only 16 when I was diagnosed. A day after that was relief. Finally I knew what was wrong and could prove to the world I was not faking or making it up. I’ve experienced almost every emotion, fear, and symptom since then but have the optimism and faith that I will not grow old w/ this disease. I’m confident a cure is coming soon. Positive thinking goes a long way.
I already knew that I had MS. I had been around people who had MS so much that it didn’t take me long to see it in myself. My mother had MS. She was diagnosed in 1971 after years of going to doctor after doctor. I didn’t fully realize it until several years of incidents that had been happening periodically throughout my life. The more I read and understand how it starts the better I can almost pinpoint how long I have had it. I likely started having symptoms when I was very young. I am too tired right now to continue poking at letters on this tablet but maybe I can come back and have this discussion another time.
I was happy after 3 years of telling them there was something wrong with me and them saying nothing was wrong and I was doing this to myself, then my therapist saying that I was not crazy and I was not making myself sick I had an answer. I thought I had cancer that no one could find and I was going to die soon. Well no death just MS!
My first reaction to my Multiple Sclerosis diagnosis was relief – knowing That this mystery thing that’s been kicking my butt for so long is real. It has a name. That means that people are working on a cure for it.
That was about thirty years ago. They’re still working on it, and according to articles I’ve read lately they’re getting close.