Connect with others who understand.

sign up log in
About MyMSTeam

Member Spotlight: 40 Years with Multiple Sclerosis - Part 2

Posted on August 27, 2019

If there is a better quote that captures the pain, hurt, fights, and consequences of having MS than “I wish I knew then what I know now,” then I’ve yet to hear it. And yet the question must be asked: is that quotation about me or more about everyone I held responsible for not understanding or caring enough when I was first diagnosed and for many years after?

I’ll be 60 in January and for almost 40 of those years I had made myself a martyr to the MS cause; my MS cause. Because it was all about me. It was only ever about me. Worst of all, to my eternal shame, I never gave a thought to my parents, powerless to help their son with multiple sclerosis.

Everything they suggested, and I mean everything, I rejected. Why? Because, as I saw it, they didn’t understand what I was going through, regardless of how they were coping. I wouldn’t allow them in. I was in my early twenties and I was insufferable. My belligerence was unforgiving. For them, I am sure, it was like parenting a toddler going through the terrible twos.

They didn’t abandon me. It would be truer to say it was the other way around. Mum and dad were as scared as I was, although I never admitted my fear. My pride was a wall that wasn’t allowing anyone to break through, even though it never stopped them from trying. They didn’t always get it right and the more they tried the more I resisted.

They suggested counseling. I agreed but it didn’t work out because the therapist who specialized in MS didn’t take my side, or at least that was the way I saw it. It was their dollar and I didn’t care for it, so I stamped my foot and petulantly threw it back at them.

Everything was a battleground. We could never meet in the middle because I wouldn’t compromise on anything they suggested, starting with diet. Back in the 80s I ate all the wrong things. Because I never gained weight, I refused to try a healthier option. If it ain’t broke why fix it, as the saying goes. Given what this blog is all about, the irony speaks for itself.

My parents are no longer here and I would give anything to have them back. To embrace them and say thank you for never giving up on me. To apologize for being that child because they deserved better. I know in my heart they unconditionally loved me as they loved my siblings, a brother and sister, who I also railroaded because it was only ever about me. Because I had MS.

This article was written by MyMSTeam member Martin as part of the Member Spotlight Series. Martin has secondary progressive multiple sclerosis and is a writer who often blogs about his experience with MS.

Do you want to be a part of the MyMSTeam Member Spotlight Series?
Let us know here: support@MyMSTeam.com

A MyMSTeam Member said:

I was diagnosed with MS 26 years ago & my family have been amazingly supportive. But one of the most important things in my life which offers… read more

posted 7 months ago

hug (34)

Recent articles

Screen shot 2020 03 04 at 3.09.17 pm
We asked and you answered! We posted this question: What bits of "advice" do you wish people...

Your Answers: The Worst MS Advice (Infographic)

We asked and you answered! We posted this question: What bits of "advice" do you wish people...
Mymsteam rc carousel relapsing remitting
Article written by Kelly Crumrin As of January 2019, there were 18 different disease-modifying...

Relapsing-Remitting MS (RRMS) Treatments Explained

Article written by Kelly Crumrin As of January 2019, there were 18 different disease-modifying...
Screen shot 2020 03 04 at 3.01.19 pm
On MyMSTeam, members shared the steps they take before, during and after Interferon injections to...

Crowdsourced: 6 Steps To Reduce Side Effects From Interferons (Infographic)

On MyMSTeam, members shared the steps they take before, during and after Interferon injections to...
Mht infographic symptoms mymsteam
Below the surface, living with MS can mean days spent in bed, missed appointments, and alternate...

MS: What People Don't See (Infographic)

Below the surface, living with MS can mean days spent in bed, missed appointments, and alternate...
Coronavirus
Article written by Kelly Crumrin Those of us living with pre-existing health conditions such as...

Canceling Is Kindness: Keeping Safe From COVID-19 With Multiple Sclerosis (MS)

Article written by Kelly Crumrin Those of us living with pre-existing health conditions such as...
Mymsteam chart ms cog symptoms top10
MyMSTeam recently conducted a survey of 898 members diagnosed with multiple sclerosis (MS)....

Life With MS Cognitive Symptoms

MyMSTeam recently conducted a survey of 898 members diagnosed with multiple sclerosis (MS)....
Impact of cognitivie symptoms on
In a 2018 survey of more than 850 MyMSTeam members, we asked about what it is like living with...

How MS Cognitive Symptoms Impact Lives

In a 2018 survey of more than 850 MyMSTeam members, we asked about what it is like living with...
Ms prognosis multiple sclerosis life expectancy
Article written by Annie Keller It’s not something anyone wants to think about, but when you get...

MS Prognosis: Multiple Sclerosis Life Expectancy

Article written by Annie Keller It’s not something anyone wants to think about, but when you get...
Mymsteam logo
While most people associate MS with mobility issues, fatigue is a common symptom of multiple...

Living with Fatigue and MS: Take the Survey

While most people associate MS with mobility issues, fatigue is a common symptom of multiple...
Screen shot 2020 03 04 at 3.04.18 pm
With more than a dozen medications now approved by the U.S. Food and Drug Administration to treat...

Infographic for the Most Common Treatments for Relapsing Forms of MS

With more than a dozen medications now approved by the U.S. Food and Drug Administration to treat...
MyMSTeam My multiple sclerosis Team

Two Ways to Get Started with MyMSTeam

Become a Member

Connect with others who are living with multiple sclerosis. Get members only access to emotional support, advice, treatment insights, and more.

sign up

Become a Subscriber

Get the latest articles about multiple sclerosis sent to your inbox.

Not now, thanks

Privacy policy
MyMSTeam My multiple sclerosis Team

Thank you for signing up.

close