Skiing was always one of my favorite hobbies. I grew up on a small farm in Windber, right outside of Johnstown, and every winter when we had a snow day, my dad would load up the car and we’d hit the slopes. Even if it wasn’t an official snow day, my mom would make it one for us with a whimsical Dr. Seuss-styled school excuse about the trails we’d explore with fiberglass boards attached to our feet. 

In 2023, when my aunt invited me on an incredible trip out to Vail, I was looking forward to a weekend with just us, fresh powder and her knowledge of trails you wouldn’t necessarily find on the lodge map.

That December, though, things started changing for me. I’d get in my car and turn to grab my seat belt, then a jolt would shoot through my spine to my fingers and toes. My feet would get so cold at night I turned into a socks-on sleeper, but even they didn’t seem to be enough. Then, the coldness went away because I couldn’t feel anything. First it was my feet, then my legs. I started to have a tight feeling around my stomach, like there was an invisible belt that was constantly one notch too tight. I didn’t know if it would stop or if I’d slowly lose all feeling.

I still went to Vail, but when I was standing at the top of the slope, I was terrified. I couldn’t let go of the tension, and the fear I’d lose control. Despite all of the symptoms I had leading up to the trip, nothing had scared me as much as being on the slopes and not having that instant feeling of freedom I’d paired with skiing my whole life. It was the trip that signaled to me that none of this was going away. 

By the time I was able to see my PCP later that winter, my fingers had started to lose their feeling and I couldn’t sleep. In my friend group, we’d call it my “witching hour” when I’d respond to messages at 2 a.m., but the hour had turned into hours. I was so exhausted, it felt like the numbness taking over my body had crept into my mind. 

Finally, I went to the doctor’s office seeking answers. Height, weight, blood pressure, current medications, small talk. An off-hand joke about squeezing my mom’s hand and forcefully humming “My Favorite Things” when I had mono in high school and was getting blood drawn. Describing the numbness, exhaustion and weird belt that wouldn’t loosen. That off-handed mono joke later turned into a key toward understanding what was wrong. I got the scans, met my neurologist. Next step, spinal tap. Diagnosis confirmed. Another sense of relief. These tests weren’t for nothing! Now, we could fix me. 

Type A, recalibrated 

Multiple sclerosis. I wasn’t sure what it was. I just knew it was a path forward, a next step. There was a name, a potential diagnosis, something I could tackle head on. 

But for me and around a million Americans, an MS diagnosis isn’t the final piece of a puzzle that we can eventually pack up into a box that goes into an attic only to be mentioned in passing. It sits on your table, present every day because there is no cure. 

I wasn’t prepared for a chronic illness that would last forever. I had thought there was going to be a finish line, that one last round, but then you get to go home.

That lack of a finish line is hard for someone who has always been a Type A overachiever. I earned a full academic scholarship, and in college held four internships while working two on-campus jobs. My parents instilled a work ethic in me that was reflected in every area of my life. I gave my all to my friendships, relationships, work and hobbies.

Seeing my MRIs for the first time was a tangible representation of what was happening to me. Scans with bright white spots painted a canvas of things I’ve lost and provided culprits to blame when I would panic in a grocery store not knowing what I had in mind when I walked in. They explained the words I couldn’t find; the memories someone shared that escaped me; the strangeness of poking my leg and wondering why I could see my hand moving, but not feel it; the struggle to remember peoples names, even my fiance’s when I’d be looking right at him. 

I went from running full speed to forgetting vet appointments for my dogs I’d give up a kidney for. I lived off of Post-its and gradually recognized the truth: I couldn’t do everything and be there for everyone and everything the way I had before. 

Under my own attack

When you have MS, your immune system attacks your central nervous system, and you become your own enemy. Lesions form on your brain, spine and optic nerves that slow and block your nerves, impacting your physical and mental capabilities.

For me, feeling in my legs came back once I began treatment. I’ll still get numbness from time to time, I’ll drop a knife when I’m sharing little steak bites with my dogs or not quite have a handle on my phone and watch it crash into the pavement. Those things don’t bother me as much; I’ve never been the epitome of grace ever since I sat down on the stage during my first ballet recital. The things that keep me up at night are all mental: Forgetting names, having to retrace my steps to figure out what decision I made the day before, and not being able to do five things at once and still have energy for five more before the day is over. It changes who I was.

Now don’t get me wrong, I’m not going into shutdown. I’m finding ways to compensate for the parts of my brain that decided to retire a little too early. I’m now known for having a slide deck for everything. If I didn’t have Google Drive to plan our upcoming marriage celebration, I probably wouldn’t even be able to tell you the name of the venue! My friend group now has a color-coordinated calendar that hosts everything from vacations to hair appointments. I am getting better about finding my limits, and not pushing them (paired with my partner finding unique ways to help me press the brakes).   

Knowing what I do now, I still feel lucky. My PCP fought alongside me to make sure I would get the scans sooner rather than later. She was able to connect my joke about blood tests and mono in high school to new research into the link between mono and MS. Epstein-Barr virus, which causes mono, has been identified as a contributing factor to the risk of developing MS, potentially triggering the autoimmune disease. 

Research funding is critical in the push to diagnose, treat and maybe one day finish MS. The more we know, the easier it can be to catch so it can be treated as quickly as possible to stop lesion progression. The National Multiple Sclerosis Society is a group that provides hope, support and resources to those living with MS. They lobby for funding, push for laws that serve people living with disabilities and work with elected officials to ensure we are doing everything we can to piece together a better puzzle. The society has invested more than $1.1 billion to advance MS research and paved the way for every effective MS treatment available today. Their site shares resources about MS, treatment options, advocacy opportunities and ways you can show your support, including events. 

Living with MS is accepting that you can still build something beautiful, even though when you originally picked your puzzle there were a lot more pieces. It’s not the creation you imagined whenever you started putting it together, but it’s still art.

Tabitha Weaver is the Chronic and Iconic Walk MS Team Captain and can be reached at tabitha.weaver15@gmail.com.

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An MS diagnosis gave a sense of relief, and now I’m figuring out how to live with it

by First-person essay by Tabitha Weaver, Pittsburgh's Public Source
May 29, 2026

<h1>An MS diagnosis gave a sense of relief, and now I’m figuring out how to live with it</h1> <p class="byline">by First-person essay by Tabitha Weaver, Pittsburgh's Public Source <br />May 29, 2026</p> <p>Skiing was always one of my favorite hobbies. I grew up on a small farm in Windber, right outside of Johnstown, and every winter when we had a snow day, my dad would load up the car and we’d hit the slopes. Even if it wasn’t an official snow day, my mom would make it one for us with a whimsical Dr. Seuss-styled school excuse about the trails we’d explore with fiberglass boards attached to our feet.&nbsp;</p> <p>In 2023, when my aunt invited me on an incredible trip out to Vail, I was looking forward to a weekend with just us, fresh powder and her knowledge of trails you wouldn’t necessarily find on the lodge map.</p> <p>That December, though, things started changing for me. I’d get in my car and turn to grab my seat belt, then a jolt would shoot through my spine to my fingers and toes. My feet would get so cold at night I turned into a socks-on sleeper, but even they didn’t seem to be enough. Then, the coldness went away because I couldn’t feel anything. First it was my feet, then my legs. I started to have a tight feeling around my stomach, like there was an invisible belt that was constantly one notch too tight. I didn’t know if it would stop or if I’d slowly lose all feeling.</p> <figure class="wp-block-image size-full"><img src="https://www.publicsource.org/wp-content/uploads/2026/05/CT_Invisible-Illness_Weaver_7.jpg" alt="Blurred person walking through a bright kitchen with white counters, blue cabinets, various kitchen items, and a window in the background." class="wp-image-1333346" /><figcaption class="wp-element-caption">Tabitha Weaver prepares a homemade bagel for lunch on May 26, which her husband made a few days prior. On some days Tabitha has a lot of energy and races around her house in Etna getting things done, and other days she is not able to do as much. (Photo by Claira Tokarz/Pittsburgh’s Public Source)</figcaption></figure> <p>I still went to Vail, but when I was standing at the top of the slope, I was terrified. I couldn’t let go of the tension, and the fear I’d lose control. Despite all of the symptoms I had leading up to the trip, nothing had scared me as much as being on the slopes and not having that instant feeling of freedom I’d paired with skiing my whole life. It was the trip that signaled to me that none of this was going away.&nbsp;</p> <p>By the time I was able to see my PCP later that winter, my fingers had started to lose their feeling and I couldn’t sleep. In my friend group, we’d call it my “witching hour” when I’d respond to messages at 2 a.m., but the hour had turned into hours. I was so exhausted, it felt like the numbness taking over my body had crept into my mind.&nbsp;</p> <p>Finally, I went to the doctor’s office seeking answers. Height, weight, blood pressure, current medications, small talk. An off-hand joke about squeezing my mom’s hand and forcefully humming “My Favorite Things” when I had mono in high school and was getting blood drawn. Describing the numbness, exhaustion and weird belt that wouldn’t loosen. That off-handed mono joke later turned into a key toward understanding what was wrong. I got the scans, met my neurologist. Next step, spinal tap. Diagnosis confirmed. Another sense of relief. These tests weren’t for nothing! Now, we could fix me.&nbsp;</p> <h2 id="h-type-a-recalibrated" class="wp-block-heading">Type A, recalibrated </h2> <p>Multiple sclerosis. I wasn’t sure what it was. I just knew it was a path forward, a next step. There was a name, a potential diagnosis, something I could tackle head on.&nbsp;</p> <p>But for me and around a million Americans, an MS diagnosis isn’t the final piece of a puzzle that we can eventually pack up into a box that goes into an attic only to be mentioned in passing. It sits on your table, present every day because there is no cure.&nbsp;</p> <p>I wasn’t prepared for a chronic illness that would last forever. I had thought there was going to be a finish line, that one last round, but then you get to go home.</p> <p>That lack of a finish line is hard for someone who has always been a Type A overachiever. I earned a full academic scholarship, and in college held four internships while working two on-campus jobs. My parents instilled a work ethic in me that was reflected in every area of my life. I gave my all to my friendships, relationships, work and hobbies.</p> <figure class="wp-block-image alignleft size-full"><img src="https://www.publicsource.org/wp-content/uploads/2026/05/CT_Invisible-Illness_Weaver_4.jpg" alt="Two hands hold separate jigsaw puzzle pieces above a table scattered with more puzzle pieces." class="wp-image-1333344" /><figcaption class="wp-element-caption">Tabitha Weaver holds two puzzle pieces, in her home in Etna on May 26. She relates much of her experience with MS through puzzles. (Photo by Claira Tokarz/Pittsburgh’s Public Source)</figcaption></figure> <p>Seeing my MRIs for the first time was a tangible representation of what was happening to me. Scans with bright white spots painted a canvas of things I’ve lost and provided culprits to blame when I would panic in a grocery store not knowing what I had in mind when I walked in. They explained the words I couldn’t find; the memories someone shared that escaped me; the strangeness of poking my leg and wondering why I could see my hand moving, but not feel it; the struggle to remember peoples names, even my fiance’s when I’d be looking right at him.&nbsp;</p> <p>I went from running full speed to forgetting vet appointments for my dogs I’d give up a kidney for. I lived off of Post-its and gradually recognized the truth: I couldn’t do everything and be there for everyone and everything the way I had before.&nbsp;</p> <h2 id="h-under-my-own-attack" class="wp-block-heading">Under my own attack</h2> <p>When you have MS, your immune system attacks your central nervous system, and you become your own enemy. Lesions form on your brain, spine and optic nerves that slow and block your nerves, impacting your physical and mental capabilities.</p> <p>For me, feeling in my legs came back once I began treatment. I'll still get numbness from time to time, I’ll drop a knife when I’m sharing little steak bites with my dogs or not quite have a handle on my phone and watch it crash into the pavement. Those things don’t bother me as much; I’ve never been the epitome of grace ever since I sat down on the stage during my first ballet recital. The things that keep me up at night are all mental: Forgetting names, having to retrace my steps to figure out what decision I made the day before, and not being able to do five things at once and still have energy for five more before the day is over. It changes who I was.</p> <figure class="wp-block-image size-full"><img src="https://www.publicsource.org/wp-content/uploads/2026/05/CT_Invisible-Illness_Weaver_6.jpg" alt="A young woman sits on a beige couch under a white blanket, holding a remote control. Framed photos and a letterboard are displayed on a shelf behind her." class="wp-image-1333345" /><figcaption class="wp-element-caption">Tabitha Weaver poses for a portrait on May 26, 2026. Some days she does not have much energy and stays curled up on the couch at home in Etna. (Photo by Claira Tokarz/Pittsburgh’s Public Source)</figcaption></figure> <p>Now don’t get me wrong, I’m not going into shutdown. I’m finding ways to compensate for the parts of my brain that decided to retire a little too early. I’m now known for having a slide deck for everything. If I didn’t have Google Drive to plan our upcoming marriage celebration, I probably wouldn’t even be able to tell you the name of the venue! My friend group now has a color-coordinated calendar that hosts everything from vacations to hair appointments. I am getting better about finding my limits, and not pushing them (paired with my partner finding unique ways to help me press the brakes).&nbsp;&nbsp;&nbsp;</p> <p>Knowing what I do now, I still feel lucky. My PCP fought alongside me to make sure I would get the scans sooner rather than later. She was able to connect my joke about blood tests and mono in high school to new research into the link between mono and MS. <a href="https://med.stanford.edu/news/all-news/2022/01/epstein-barr-virus-multiple-sclerosis.html">Epstein-Barr virus</a>, which causes mono, has been identified as a contributing factor to the risk of developing MS, potentially triggering the autoimmune disease.&nbsp;</p> <figure class="wp-block-image size-full"><img src="https://www.publicsource.org/wp-content/uploads/2026/05/CT_Invisible-Illness_Weaver_19.jpg" alt="Two people kneel outdoors, smiling while holding leashes attached to two fluffy dogs in harnesses near a suburban house and a parked car." class="wp-image-1333351" /><figcaption class="wp-element-caption">Tabitha Weaver and her husband, Patrick Carlson, taking their two dogs, Leo and Ellie, out for a walk on May 26, outside of their home in Etna. (Photo by Claira Tokarz/Pittsburgh’s Public Source)</figcaption></figure> <p>Research funding is critical in the push to diagnose, treat and maybe one day finish MS. The more we know, the easier it can be to catch so it can be treated as quickly as possible to stop lesion progression. The <a href="https://www.nationalmssociety.org/">National Multiple Sclerosis Society</a> is a group that provides hope, support and resources to those living with MS. They lobby for funding, push for laws that serve people living with disabilities and work with elected officials to ensure we are doing everything we can to piece together a better puzzle. The society has invested more than $1.1 billion to advance MS research and paved the way for every effective MS treatment available today. Their site shares resources about MS, treatment options, advocacy opportunities and ways you can show your support, including events.&nbsp;</p> <p>Living with MS is accepting that you can still build something beautiful, even though when you originally picked your puzzle there were a lot more pieces. It’s not the creation you imagined whenever you started putting it together, but it’s still art.</p> <p><em>Tabitha Weaver is the </em><a href="https://events.nationalmssociety.org/team/98585"><em>Chronic and Iconic Walk MS Team Captain</em></a><em> and can be reached at </em><a href="mailto:tbitha.weaver15@gmail.com"><em>tabitha.weaver15@gmail.com</em></a><em>.</em></p> <p>This &lt;a target=&quot;_blank&quot; href=&quot;https://www.publicsource.org/figuring-out-life-with-multiple-sclerosis-ms/&quot;&gt;article&lt;/a&gt; first appeared on &lt;a target=&quot;_blank&quot; href=&quot;https://www.publicsource.org&quot;&gt;Pittsburgh&#039;s Public Source&lt;/a&gt; and is republished here under a &lt;a target=&quot;_blank&quot; href=&quot;https://creativecommons.org/licenses/by-nd/4.0/&quot;&gt;Creative Commons Attribution-NoDerivatives 4.0 International License&lt;/a&gt;.&lt;img src=&quot;https://i0.wp.com/www.publicsource.org/wp-content/uploads/2025/07/cropped-ps_circle_favicon_blue.png?resize=150%2C150&amp;amp;ssl=1&quot; style=&quot;width:1em;height:1em;margin-left:10px;&quot;&gt;</p> &lt;img id=&quot;republication-tracker-tool-source&quot; src=&quot;https://www.publicsource.org/?republication-pixel=true&amp;post=1333336&amp;amp;ga4=G-CCLXQK5C14&quot; style=&quot;width:1px;height:1px;&quot;&gt;&lt;script&gt; PARSELY = { autotrack: false, onload: function() { PARSELY.beacon.trackPageView({ url: &quot;https://www.publicsource.org/figuring-out-life-with-multiple-sclerosis-ms/&quot;, urlref: window.location.href }); } } &lt;/script&gt; &lt;script id=&quot;parsely-cfg&quot; src=&quot;//cdn.parsely.com/keys/publicsource.org/p.js&quot;&gt;&lt;/script&gt;

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