By: Brittany Quiroz, “A Hot MS”
How do we really come to terms with accepting our new reality with an incurable progressive disability? Right off the bat we probably feel like we have been predisposed to failure. Self-acceptance requires us to really be comfortable with our present situation and let’s face it, there are plenty of parts about living with Multiple Sclerosis that are not considered “comfortable”. MS can present an abundance of changes and unexpected whiplash that we do our best to navigate through.
The key to sustainable self-acceptance relies on our ability to stay present while not setting unrealistic expectations for ourselves. We can be really good at beating ourselves up, can’t we? It doesn’t help that we live in an era where competition is all around us. Our status in society can easily be determined based on how many likes we get. How many followers we have. What car we drive. What our zip code is. What job we have. It’s easy to feel we’re in constant competition with the world.
So what good is it to be in competition with ourselves? Let me break it down for you. We kick ourselves because some days we struggle to keep up with our loved ones. We get disappointed in ourselves for not being able to do certain things we used to be able to do. We get frustrated that our shoe collection has primarily turned into a “sneaker collection” because staying balanced is like our very own circus act. This only puts us in competition with the past version of ourselves pre-diagnosis. So in turn, we wind up constantly looking over our shoulder at what once was but isn’t presently.
So how do we learn to accept our present? We get comfortable with being uncomfortable. Naturally we like to feel we have control over situations. Feeling a sense of control is comfortable and familiar. It doesn’t offer too much fear if we know what to expect. Fear stems from a place of uncertainty and as we know, there is a ton of uncertainty with MS. The disease really likes to keep us on our toes. Staying in the now allows us to only look at what is currently in front of us. Instead of comparing ourselves to an alternative version of someone we once knew.
I like to approach my day with metaphorical horse blinders on- only looking at what is in front of me. This avoids any past reflection or compassion and also doesn’t project into the future, which can often put me into a space of worrying about things that haven’t even happened yet.
Adaptation can also give us an edge when it comes to the uncertainties of MS. The quicker we learn to go with the flow of what our body decides to do, the easier it is to really accept the changes we are faced with. Going with the flow doesn’t mean you have to maintain this optimistic and overly positive attitude all the time. That’s unrealistic and can set you up to fail. Allowing ourselves to really feel is often frowned upon. Again, we have high expectations for ourselves to hold it all together. If we fall apart, we are weak. If things get messy, we are a disaster. Giving ourselves permission to experience the emotions we need to is vital to staying present.
Fear is inevitable, but our reaction to it is a decision. Read that sentence again if you need to. I truly believe there is value in perspective. To be able to oversee a not so comfortable situation and find an alternative way of observing it that allows sustainability. Fear, worry and self-comparison aren’t sustainable.
Every single person living with MS experiences something different. We know this. That no two people have the exact same molecular makeup in terms of symptoms, mobility, cognition etc. Yet every one of us knows that our reality is different. It might be different than it was 10 years ago, or it might be different than it was even 10 minutes ago. Either way changes are happening. Give yourself grace. You’re going through something pretty profound and that is something worthy of praising yourself for.
About Brittany Quiroz
Brittany Quiroz created “A Hot MS” 5 days after her diagnosis with MS in 2019 to encourage those living with the disease to “Celebrate your Mess!” and widen the perception of what disability looks like. She is a full-time MS Advocate, motivational speaker, recording artist, painter, podcast host, and philanthropist in the space of multiple sclerosis. Quiroz is a 3-time nominee of the Social Health awards and was named a finalist as “Creative Contributor” in 2023. Quiroz, alongside her music partner Kristen Spath, recently released the first single of their upcoming album “Never Have My Soul”. The single was written directly to the disease of MS for the MS Community. The duo, also known as 8:28, has now focused all of their original music on the MS and disability communities.
Brittany,
Thank you so much for your contribution. It was very relatable, which I desperately need right now as a Newbie MSer. My diagnosis has taken 2 1/2 years and I finally feel more “understood” and able to connect with others to try to understand what is happening to me, and how to get through it without becoming an emotional black hole for my loved ones. I laughed out loud about your shoe comment. I recently took a cruise and packed dress shoes but was surprised to find that I could no longer balance, much less walk, in heels. No choice but to accept this and move on with some mustered up grace. I’m going to try to use horse blinders now too! It’s a good idea.
I have to disagree that our reaction to fear is a decision; many times it manifests out of anxiety, one of the emotional challenges many with M.S. have, and stressors can cause anxiety, which in turn causes fear. So, a stressor arises, a person with M.S. has an emotional meltdown, and then has a moment of self-chastisement for having a meltdown until at some point, he/she realizes it wasn’t normal, it was M.S. It’s all part of the journey. I think we need to have a better understanding of the emotional challenges diseases like M.S. cause.
I know what I am going to say is weird but my wife of 39 years is suffering with lupus and it is difficult to relate to her. She suffers from a lot of pain and I have none. I suffer from lassitude, balance and general spacisity. I see what she goes through and have to consider myself lucky in that sense. I would never want to go through what she does on a daily basis. We suffer differently. We can’t even sympathize with each other. The only thing I can do is try to help her in any way I can and put my complaints aside.