Reborn: Finding Yourself Post Diagnosis

By Ashley Ringstaff

4 min read

I feel like this is a big issue that most of us have dealt with or are still dealing with it. Once you get diagnosed with a life-altering disease, you can’t just continue as you were without making alterations to your lifestyle.

I was considered relatively healthy

For me, I wasn’t the type of person to ever really need to go to the doctor a whole lot (except when I was younger and broke a lot of bones for being clumsy). But what I mean is, most of my life I was considered a “healthy” young female with no health issues.

Learning to manage a health condition

So, with no experience in having to deal/manage my life with a medical issue, I was at a complete loss as to what I had to do. I’ve never had to keep track of a medication list or a symptom list. In the past, when I felt “funny” or had a sudden pain, I didn’t think much of it.

After I was diagnosed, I felt like every little thing could be something major because look what happened when I didn’t initially pay attention to the symptoms that led to my diagnosis! So, I sort of felt like I was being a hypochondriac after I got my diagnosis because I was scared of something else being wrong.

My new identity - I wasn’t invincible

When I’m referring to being “reborn,” I mean that in the realest way. Because I’m now living a completely different life. I don’t mean that in a negative way, but let’s be honest, it wasn’t a very happy/positive time either. But I can say I’m happy. I lost friends, stopped my initial career path, fell into depression. You get the idea. But I found BETTER friends and decided I wasn’t going to just let MS ruin or run my life.

There is no MS guidebook

While we’re trying to figure out how to live this new life, there is no guide on how to do so. Since we’re all “snowflakes,” it is different for all of us in so many ways but at the same time, similar.

Figuring out what worked for me

I don’t have the answers on how to do it. I can tell you from my personal experience it took me SEVEN years to figure out what worked for ME in regards to medicine and diet, the whole enchilada. Seven years... scary, right? But don’t think that it will take that long for you. Because I saw people get it right their very first try. Frustrating to witness personally, but not bad because they were doing well.

Comparing myself to others with MS

I used to compare myself and how I was doing to almost every other person I spoke to that had MS. That’s just what we do, we compare to learn from each other. But when I was doing this comparison, I continued to get frustrated time and time again.

Why does it work for them and not for me?

What am I doing wrong? Truth is, I wasn’t doing anything wrong. There is no wrong or right way in that scenario because we’re still TRYING. We’re living our lives each day, not knowing what could happen to us the next second, minute, or day. I feel like that applies to every single human being, MS or no MS. But it just means something more to us. Because we woke up one day and we weren’t the same as the day before.

Tips for surviving post-diagnosis

Anyways, what I’m trying to get at is this:

DO NOT give up! You’re not allowed (per me - and I’ve been told I’m kinda bossy). I’m here for you as well as SO many others within the community. We’re a family, in a way, so WE get it.
DO what is best for YOU. You have to be comfortable with your treatment plan, your healthcare team, and any other diet/exercise plan you are committing to. If you are not comfortable with it, it’s not going to be beneficial for you (speaking from experience).
There is NO one size fits all with us. I know, we’re complicated and stubborn, but of course, you already knew that. I've come to learn that my MS is not your MS and vice versa.
It’s okay to be emotional during all of this. As long as after you have your breakdown, you pick yourself back up and continue to fight for YOU. It’s okay to lean on people for support, too.
Only you know yourself the best. Do what's best for you; don't worry about what others think.
Acceptance. We have MS. It sucks, it’s horrible, it hurts so much at times. But we still have control over our happiness. So, find your happiness.

Finding my identity after an MS diagnosis

It's really hard to put into words what life is like after you are diagnosed. However, I feel like I'm a completely different person, and not in a bad way. I've stopped worrying about the small stuff and really focusing on the big picture.

Focusing on what's important

Some people have told me that my attitude has changed a lot, that I don't seem to care about certain things like I used to. The truth is, I don't. I care about the things that truly matter. Stress isn't good for us, so I just brush things off my shoulders, because in the grand scheme of things, it's not worth it. Don’t dread the future. Look forward to kicking its a$$.

xoxo
Ashley Ringstaff

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Janus Galante Moderator
Ashley, thank you for listing the tips for surviving post diagnosis! So important to remember them and apply them the very best we can...Janus
asapcynthia Member
Fortunately, depending on how dense you really are, you cannot magically think you way out of it. Upon my diagnosis my mother in law ‘toss those pills out and run the other way’, which made me laugh. I said I’d love to, but running isn’t an option since I can’t really walk. What I find, tho, is reinventing yourself is required at every phase is your life. As a person, a mom, an employee, a divorce, you have to get on with life and it’s changes and adapt. Reinventing when ms isn’t really why you need to reinvent yourself happens everyday, but becomes part of the mix instead. In the beginning it’s hard, they don’t call ms ‘instant old age’ for nothing. I am now near retirement age and all my friends are catching up. All have bad hips and knees that need replacing. Many, and I don’t know why, are getting diagnosed with Parkinson’s. The human body wears out. I actually think I have an edge here. I have accepted, adapted, and made allowances for the randomness of my ms most of my adult life. Everyone else isn’t as far along in the journey as I am, but those that are lucky who have lived this long are now reinventing themselves having to include their own health issues. My point is you have grow up and reinvent yourself regardless of ms. In spite of ms. Many times in your life. MS is good practice, and the older you get it may become just one part of the puzzle. But adapt or die, that’s not ms. That’s Charles Darwin.
1. Therry Neilsen Moderator & Contributor
 Asapcynthia, great comment! I have always believed that when you come to the end of your rope, you tie a knot and keep going. MS had given me the opportunity to reinvent myself and tie those knots over and over again, and I relish the chances! Adaptability is a great life skill, and thanks for bringing it into the conversation. I salute you!
nadazmd Member
Remember that the sun is always shining underneath the clouds and that the storm will pass. Don't lose hope, MSWarrior Ashley Ringstaff😀
1. Janus Galante Moderator
 Thank you for the beautiful sentiment and encouraging words to us all nadazmd! Janus
Therry Neilsen Moderator & Contributor
Amen, Ashley! THanks for giving us such good techniques for handling the disease and what it does to us and our previous opinions of ourselves. We thought we knew ourselves, and then MS comes along and introduces an entirely new person with life plans we don't even recognize. I've been living with my bodymate MS since 1978, and I;m still learning new ways to accommodate, accelerate and kick a$$!
cefranz Member
I've been with the MonSter since 2011 diagnosed but fully since 2005. I'm still trying to find the right way to handle things. Some work and some don't. Most times, it don't work. I don't know what to do. I'm lost. My hubby sometimes gets annoyed with me when I have a flare-up.
bmccown Member
You have no idea how much I needed this article when IT found ME as I scrolled through Facebook. This has probably been one of the most helpful for me as a newly diagnosed MS patient. I can’t lie. I’m terrified. I can’t even imagine being anything like I was before a couple episodes of weakness symptoms sent me to the doctor for a checkup. I never imagined I would be here a few months, a couple MRI’s, and a few blood tests later. It’s still unreal. I had a tough few weeks in that first month with what I now know was a flare up. It’s been such an emotional time for me. I’m not the same and it’s hard to accept that I have a life long disease at 30 years old. Remembering this time last year when I turned 30 and thinking about how I had nothing to worry about, but was so excited about my 30’s. I have a very strenuous surgical nursing career and it’s scary to think about the future with that as I’m already experiencing so much fatigue and a few other symptoms. I’ve had tough days, but I look forward to being in the mental stage you are in. I’ll definitely be coming back to read this when I can’t remember to look past what I’m experiencing in the tough moments. Thank you.
suek Member
Kudos to you Ashley! Beautifully expressed sentiments that should resonate with all! We are indeed “snowflakes” and should be mindful when comparing notes with others, unless we can do so without prejudice. We are all facing the same journey, each at our own speed and skill level in handling the obstacles that lie ahead. Some may have a mild or benign case while others may be progressive. The rest of us fall anywhere in between. Our emotions, perceptions, coping skills, tolerance for pain and ability to accept change vary person to person. Our essence, who and what we, how we behave and think developed in our earliest years and should hold steady throughout. There is no “right way” to handle a disease that is complex, not yet understood and unpredictable, just as there is no “wrong way”. We must all do what works best for us. Some are “Warriors”, managing to keep a positive attitude despite the challenges and limits we all experience to one degree or another. And there are those that struggle, physically, emotionally or mentally, caught up in darkness, unable to cope. To those we offer empathy, a shoulder to cry on, advice (if welcome) and encouragement. We cannot “rescue” them, nor should we try. That is something that must come from within, when they are ready. All the inspiration in the world will not help until one is receptive. And please know… those of us that have found peace with this monster are not out to judge ANYONE or make them feel inferior. This is not a contest to see who wears it best! So when their spunk or enthusiasm becomes daunting, instead of getting annoyed, tap into them to learn their secrets. You might be surprised! 
1. Lori Foster Member
 Well put, @suek! Thank you for sharing your thoughts. - Lori (Team Member)

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