Patient Blogs | Multiple Sclerosis
How Living With a Chronic Condition Like MS Has Affected My Identity
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It could sound a little negative for some, but at the same time, it's a reality: Living with a chronic condition can take a toll on your self-esteem. But I believe that we should allow ourselves to feel our emotions, process them, and move forward. There's nothing wrong with admitting that your condition is affecting you emotionally. Not everything is going to be butterflies and rainbows all the time. Your real strength shows when you are at your lowest and you’re still capable of getting back up and continuing.

As part of my healing process, I’ve had to work through my emotions, accepting my new life, to be able to come out successfully. I hear all the time the worn-out phrase “MS doesn't define me.” Doesn't it really? I feel like accepting that is kind of denying who I am from this point forward. I’m not embarrassed by my condition. I'm completely unapologetic for needing help, saying no, or not being available.

There is a fine line between letting MS define who you are and denying who you are now. It might not define the essence of my soul, but it defines the way I walk now, the modifications I have to make, the foods I eat, even the shoes I wear now. I've said this before: Toxic positivity isn’t healthy. 

I prefer to believe that MS defines the new, enhanced version of me. A person that's capable of fighting relentlessly. A person that uses this life experience as a tool to help others. A person that doesn't give up. A person that has turned around her new reality to bring awareness and be a voice for others. A true warrior, suddenly aware of her superpowers.

I could be misunderstood for saying this, but it's the way I look at it. My disability is a consequence of multiple sclerosis. Therefore, it does define me, whether I like it or not. I'm more than capable of doing anything I want, but I have to do those things from a handicapped person’s abilities and limitations. Isn't that defining me?

The point is to accept myself for who I am now, without taking away from my truth. How could I accept myself, my limitations, my new life, if I'm saying that MS doesn't define me? To love yourself and to be compassionate with yourself, you have to accept yourself first. It wouldn’t be fair for me to go around thinking that I’m the same person. I think it's naive and immature to pretend that everything is OK and nothing has changed. 

Opening up and being vulnerable publicly is not being defeated. On the contrary, it’s a sign of strength. It’s important for me to stay true to myself. That people get to know me and see me as who I really am, with the ups and downs of living with a chronic disease. 

I find that the only way my readers will relate to me is if I show all the faces of living with MS. The only way they can identify themselves with me is by expressing the good and the bad, without any filters. I’m just one more person living with multiple sclerosis. I'm no different. I feel like my duty is to be honest to my audience and let them know that I go through the very same things they do at an emotional level. 

MS has affected my identity in a good way and a bad way. In a good way because I learned how strong I am and defeated all the odds, and because my spirit has been uplifted to an unprecedented level and I've achieved things that I never imagined possible. In a bad way because for some time, I felt down, insecure, unworthy.

I won't lie, I've been through really dark times through my journey, but I understood that it was all part of the process. I was mourning who I was before. I was allowing myself to yearn for the old me. And through all that pain, a new, better version came out as a result. Now, when my emotions are not all pumped up, I wait it out, reassuring myself that “All Is Well” and “It Too Shall Pass.” 

In the past, I was defined as a sexy boss lady, always well-dressed, a good-looking woman in high heels that got all the attention and all eyes on her when walking into a room. Intelligent, hard worker, very feminine, independent. Now, I'm defined as a support group leader, a blogger, a social media persona, a leader in the community that walks funny and uses and wears all sorts of walking aids. All in all, good qualities, but very different. 

I'm still the same person, I just live in a different body. So again, my identity has changed, not my essence. But I can’t ignore the differences between the old me and the new me. 

Even when you don't live with a disability or a chronic disease, you still evolve through the years. Your priorities aren't the same as they were 20 years ago. The way you think or feel about certain things might have changed. So, saying that a crushing disease like MS doesn’t define me, doesn't make any sense to me. I’m different because of it. I’m better.

Is it possible to be two different persons inside one same body? Well, I wasn't given a choice. It's not a contradiction. It's just who I am. I still identify myself as an attractive woman, but also, I now identify myself as a disabled person. 

If you ask me, right off the bat I'll tell you I want to go back to who I was before. I miss it. But then, I think of all the good things that came after my diagnosis. How I’ve become a wiser, empowered, stronger person. I really embrace who I am now. I will not change it for anything. Yes, I miss my mobility, of course. I got to this place through that transformation, that metamorphosis. I’m a butterfly that emerged from its chrysalis.

Being diagnosed with MS was a turning point in my life. Something that shook my life and changed it forever. It struck me like lightning, out of nowhere. I wasn't ready. Pushed into the lights, not knowing what to do, I was forced to become a different form of myself. I shed my skin, and I was born again.

 

To connect with other people living with multiple sclerosis join our MS Facebook Support Group.

 

 

 

Photo Credit: Tetra Images via Getty Images

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Mayteé Ramos

Mayteé Ramos

Diagnosed since 2015

Mayteé Ramos was diagnosed with relapsing-remitting multiple sclerosis in 2015. She is a support group leader for the National Multiple Sclerosis Society, a member of the Buddy Network for Shift.ms, and has participated in programs such as the “Ask an MS Expert” series and the PBS American Portrait project. She enjoys traveling, watching tennis, collecting jewelry, and spending time with her three sons. Connect with her here.

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