After my freshman year of high school, my brother went off to college, and my dad reluctantly decided to move us from California to Minnesota, where his extended family could help us with my mom. My mom was no longer driving, having a lot of accidents and falls, and feeling emotionally distressed from being home alone all day. My dad’s hope was that my mom would have more visitors and support. I didn’t know how to answer my new classmates when they asked, “Why the hell would you leave California for Minnesota?” Most of the time, I shrugged it off. Explaining MS is hard because it’s an uncommon disease that affects the body and the brain—many people aren’t familiar with it unless they know someone who has it. Even if they do know someone who has it, that person’s symptoms and health can be wildly different from another’s.

But I didn’t know anyone else who had MS. I hadn’t even read any books or seen any movies with characters who had MS. I felt like maybe this was only happening to my mom. I didn’t know what was going to happen to her. Since I avoided talking about my mom, when I was confronted with even the most innocuous questions that had to do with her illness, I would feel completely overwhelmed. I literally couldn’t say more than a few sentences about my mom without tearing up. Once, a teacher whom I especially liked asked me everyone’s favorite, about why we had moved. I was tired of the normal back-and-forth, so I blurted out, “BECAUSE MY MOM’S DYING.” Even though he responded with kindness and asked a few follow-up questions, I was embarrassed by my outburst. I didn’t say anything so blunt about my mom again.

My family members outside of our immediate household sometimes reached out to me about my mom’s sickness. Their approaches varied: That year, an aunt from out of town visited and tried to talk to me about my mom, but her approach was a real turn-off—she put a blanket over our heads and chanted, “Vent! Vent! Vent!” That was definitely not my style, and I did not open up. Luckily, I had another aunt, who was much closer to the situation and who was easier to talk to. She told my guidance counselor at high school what was up with my mom, and she informed my teachers so I didn’t have to. On the nights when I was at the hospital because my mom had a UTI, my math homework was the last thing on my mind, so my aunt’s support was invaluable: Since my teacher knew about my mom’s MS, we worked out a deal where I could get some “free passes” on homework assignments. Even though I felt really alone when it came to my mom’s sickness, my loved ones had my back.

For pragmatic reasons, I have seen over the years that sometimes, as in the case with my high school teachers, people have to know about my mom’s MS in order to accommodate my needing to care for her. When it’s necessary for me to disclose information about her health without becoming overwhelmed, I talk broadly and only give as many details as I feel comfortable with: Instead of starting with, “My mom has multiple sclerosis, and is severely disabled, and I am her caretaker,” I start with, “My mom’s not in good health,” and handle follow-up questions without getting too specific/starting to cry all over the place. I give people the information that’s relevant to what we’re doing: When I explained my situation at my last job to my boss, l let her know that my caregiver duties meant that on Wednesdays, the night I take over for my dad, I have to leave right at 5 PM. This avoided any awkward situations where she might hand me a last minute-task at 4:45 and then I’d be panicking to get it done. If you have a job or other after-school activities, it can be helpful to bring up your situation in the beginning. It’s always easier to explain something difficult when you’re NOT in the middle of a crisis. That way, if you get an emergency call, or if you’re five minutes late because someone had an accident, your supervisor is more likely to understand.

To help me through this, I decided to try talking to a therapist. In our first session, I told her that I DID NOT want to talk about my mom. I thought my other issues—anxiety; a long-term relationship—were more pressing, and I didn’t want our sessions to get hijacked by that big topic. Of course, when we followed the root of my anxiety and even some of my intimacy issues they all led to my grief about my mom. My therapist told me all the thoughts and emotions tied to grieving my mom are like a big dark pool inside me. Since I rarely dipped my toes in that pool, being asked to confront it felt like the walls of the pool were collapsing and all the water was rushing out uncontrollably. However, if I processed my grief, through talking, journaling, or art I could make cracks in the pool and let some of the water trickle out slowly instead of becoming a monsoon. I’ve learned that the point of talking about it isn’t to solve the problem. Simply having someone else witness and validate my grief helps me process it. It lessens the weight of carrying it by yourself to share it with someone else. For me this has mainly been in therapy. I found it easier to open up in a structured environment. In fact, I couldn’t help talking about my mom from the moment I walked into my therapist’s office and started tearing up. I guess I felt allowed to—that it was the appropriate place and time.

If something makes me think about my mom, like I’m alone in my car and a sad story comes on NPR, I’ll let myself cry. Instead of feeling silly and trying to compose myself, I just let it out. Watching movies or reading books that I relate to also helps. My ears perk up at any mention of MS in the media: I recently read the book The Meaning of Maggie by Megan Jean Sovern, which is about a young girl dealing with her Dad’s MS and the confusion she had around the disease, and it really resonated with me. I love that Amy Schumer has been vocal about her dad’s MS, and in her movie Trainwreck, her character’s dad has MS, too. I went and saw Trainwreck alone, specifically so I could cry in private because I knew about the MS subplot. It was really amazing to see a character in a romantic comedy struggling with putting a parent in assisted living and dealing with grief, but still living a “normal” life.

Michelle Obama has also spoken publicly about her dad’s struggle with MS. During Barack Obama’s interview with the podcast WTF Wth Marc Maron, the President talks about when he first started dating Michelle, and how she got annoyed when he was late to meet her (this particular part starts at the one-hour mark). He didn’t get what the big deal was until Michelle explained to him how her dad had to wake up an hour earlier than everyone else so he could button his own shirt and get ready for the day. If she wanted to go see her brother play basketball, they had to get there early, to get up the stairs on his crutches, so being on time was really important to her—and I could totally relate. It’s helpful to know I’m not alone when having a disabled parent means you experience a set of challenges most people don’t. The fact that the First Lady and my favorite comedian have been through the same things is extremely comforting.

Having a sick parent sometimes feels like I was dealt the worst hand ever. I would give anything to have a healthy, “normal” mom I could go to the mall and have lunch with. But allowing myself to accept support, and seeking out similar stories, makes me feel less like I’m the only one carrying this burden. Not trying to avoid my sadness made me open up to the joys in life, too: I’ve definitely become more open with the people in my life in all sorts of ways since I’ve started talking about my mom. It may seem easier to try and contain big, dark pools of grief, but when those walls eventually break, it feels like you’re drowning. Now, I am steadying the waters by acknowledging my situation for what it is—by talking about it, and listening to others. If you have a sick, disabled, or handicapped parent, I’m sorry for what you’re going through, and I hope you can see what it took me so long to learn: You are not alone. ♦