In 2018 at the age of 35, Marti Hines was diagnosed withmultiple sclerosis (M.S.).
Hines says her diagnosis came out of nowhere.
Unsurprisingly, she describes the diagnosis as traumatic.
In this as-told-to, a woman with M.S. shares her journey toward emotional support.
Its a common side effect of M.S., according to theNational Institute of Neurological Disorders and Stroke.
She had to have brain surgery in February 2020.
After her recovery, the world was a very different place, with lockdowns in full force.
She then was faced with navigating her chronic illness in a world that felt extremely unsafe for immunocompromised people.
Staying safe added another layer of isolation and emotional distress.
But she didnt get to this place overnight.
We asked Hines to share how shes found emotional support to help navigate this life-long condition.
This is her story, as told to health reporter Amy Marturana Winderl.
But for me, it really came out of nowhere.
It was very traumatic.
I wound up getting medevaced to a hospital in Boston where I had an MRI.
It revealed 19 lesions on my brain and three on my spinal cord and was conclusive for M.S.
It was very shocking.
I went through a lot of denial.
My brain just rejected this information, because in my mind, I was fine.
Thats really what got me to click over into this place where I began my journey towards acceptance.
Im still on that journey.
Learning more about M.S.
I need information, thats how I cope and manage.
So I just deep-dived on the internet.
Thats where I really began to look for reassurances, answers, and support.
Finding the chronic illness community online
Then from there, I went to social media.
The chronic illness community is so strong and so vibrant.
I even found an all Black womens M.S.
group calledWe Are ILLmatic.
That was a great community I was able to join.
I also connected with folks with M.S.
that were on Instagram.
You start to trade medical questions and information about side effects.
That was really helpful and started to help me feel not so alone.
A healthy person cant imagine what its like to have that be a part of your daily experience.
Ive definitely made some great friends on social media.
But if you might, I always say its only going to help you feel better.
One thing that was really helpful for me was learning about thespoon theory.
So say everyone starts with 12.
For a sick person, showering can take up two of those spoons.
Physically going to work can use up another three.
If they make dinner, thats another two, exercise, four more.
When the spoons are out, thats it.
Its like when youre driving and the gas tank is on E. Just a hard stop.
or, It sounds like that took out a lot of spoons, you probably need to rest.
Hair washing days use up all the spoonsforget it.
The sooner you’ve got the option to let people in and use support groups, the better.
The biggest lesson I learned in therapy is to have grace, both for myself and others.
Youre not lazy, youre not lagging behind.
And give others grace.
Because they probably are going to say the wrong thing.
Theres this ableism that even I still possessI gaslight myself daily.
So just showing grace all around is something therapy really helped me to get to.
A lot of folks with M.S.
have petsmaybe 80% of people I know with M.S.
They were like, You really should do it, get a dog.
Dogs are the most intuitive, sweetest souls.
Theres just somebody thats there with you.
And she definitely helps me get up every day.
I cant stay in bed all day, because my dog needs to go out.
Having faith
I grew up in the church, so it has always been a part of my life.
But for me, it also helps when I get bad news or news thats not that promising.
For example, a couple of months ago, I found out that I had new lesions.
But I truly believe that God has me, and he has it.
So knowing that, and really believing that, helps take away a lot of my anxiety.
I know that hes going to take care of me, and its going to be okay.
I dont know how its going to turn out, but I know that hes with me.
Having some sort of higher power to believe injust having faith in something bigger than yourselfis really powerful.
Its easy to spiral and go to darker places.
What were going through sucks.
Its okay to feel crummy and have days without a positive outlook.
So if you want to be sad, you should.
I take the time to just veg out, watch TV, read, pray, and meditate.
This interview has been edited and condensed for length and clarity.
