How a support system helps me persevere on my MS journey

My graduation ceremony at the University of Texas at Austin had just ended, and there were swarms of people everywhere I looked. I was sweating profusely in the summer heat and overstimulated by the large crowds. Thankfully, my mom called to tell me where my family was waiting for me.

After meticulously searching, I eventually found my loved ones. Warm hugs and heartfelt words from my family and friends embraced me. At that moment, I realized how loved I am and thought, “Who and where would I be without them?”

I may be hyper-independent, but everyone needs a support system — especially in life with multiple sclerosis (MS).

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Let’s take a trip down memory lane

Desiree Lama, center, hugs her mom, Manuela Lama, and brother, Michael Lama Jr., after graduating from University of Texas at Austin. (Photo by Barbara Watts Smithyman)

It was around the time of my first neurological episode in 2014 that I fully understood the importance of having a support system. During this period, I experienced heightened levels of uncertainty and distress because doctors were unable to determine the cause of my vision loss. I was only 14 years old and taking about 50 steroid pills a day.

A neuro-ophthalmologist eventually diagnosed me with a bad case of optic neuritis. Though I mostly recovered my vision thanks to the steroids, the doctor explained that I’d likely experience a recurrence at some point.

Fear struck me like a ton of bricks. Had it not been for my mom, my brother, and my aunt, I would’ve been unable to persevere through such uncertain times.

Support looks different for each of us

After I was diagnosed with MS in late 2016, I had to reevaluate what type of support I required. Throughout our journeys with the condition, changes in our health can alter what kind of help and support we need. That said, what does support look like for you?

For me, it looks like patience and understanding, accompanied by lots of humor. Most of the time, I can’t adequately describe what I’m feeling and how my symptoms are affecting me. It’s in these instances that others’ patience and understanding become necessary.

And humor! Who doesn’t love a good laugh? Whether I’m facing one of my darkest days or the sun is shining its brightest, I just want to laugh; after all, it’s the best medicine. A genuine laugh is enough to warm my soul and lift my spirits on difficult days.

Balancing independence and support

Desiree Lama, far right, is joined by part of her support system: from left, her brother, Michael Lama Jr., her mom, Manuela Lama, and her aunt, Adela Puente. (Photo by Shane Potts)

Even though support is necessary, asking for and accepting help has been difficult for me since my diagnosis. I’m extremely independent and the type of person who’d rather try to deal with everything on my own, rather than ask for help from those around me. Many might call it stubbornness.

But — news flash! — I’m not superwoman. I need support and a shoulder to cry on when the days consume me with darkness.

Every day, I have to remind myself that I’m only human — and one with a chronic illness. Asking for help isn’t a reflection of lower worth, and it doesn’t make me a failure or reveal any weaknesses. I can be a strong, independent soul and ask for help when it’s necessary.

If you’re anything like me, let this be a reminder that it’s completely OK to rely on others. Knowing when to ask for help and how to accept support is part of the learning curve of life. We’re all constantly learning, and for some of us, that means figuring out how to welcome assistance with open arms.

Our support systems may not have the ability to resolve our symptoms, but what they can do is hold our hand and guide us to easier days. Hand in hand and heart to heart, our people can walk by our side and into the sunlight.

My MS journey wouldn’t be possible without my wonderful support system. The love and care of my family and friends enables me to write this column and continue doing the things I love — like obsessing over shark documentaries.

Who knows who and where I’d be without them?

With love,

Desiree

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.