Reborn: Finding Yourself Post Diagnosis
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$$.
Do you have a fear of needles and take medication that requires injection?