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Meet - Lilith

Rheinland-Pfalz, Germany

When were you diagnosed with MS? 2022

What type of MS do you have? Relapsing-Remitting MS (RRMS)

#1: Can you tell us a little about your journey with MS. How did you feel about your initial diagnosis and how it has affected your life?

Receiving my MS diagnosis was a real blow to me, especially since I've already been through a lot in my life. I used to tell myself that at least I was "physically healthy", even though everything else seemed to be falling apart. I knew my legs could carry me to where I needed to go, no matter how challenging the journey was. But then, I received my diagnosis of MS, which felt like a cruel joke. This has had a significant impact on my life, and even though I can't trust that my legs will still carry me, I know that life must go on.

#2: What MS symptoms do you have and how do you manage them on a daily basis?

The first time I experienced a flare-up, it primarily affected my vision, and unfortunately, some of the issues have persisted. I now see double when looking at things in the distance and everything is generally more blurry than before. In addition to my vision issues, I am also struggling with fatigue and depression, as well as memory loss and other cognitive difficulties. Another symptom I experience is tingling in my legs after walking, but thankfully it disappears after a few minutes.

So, how do I manage it? For me, the key is acceptance. This condition is a part of my life now, and I cannot change that. But by accepting it, I am able to manage it better.

#3: Who/What has been your most important support system?

Having the ability to still do my art is my greatest source of support. My family tries to assist me with my illness, but it is still overwhelming for them. Due to my lack of energy, I find it challenging to interact with my friends, and when I do, I prefer not to discuss my illness. While I have met many incredible people online, these virtual friendships are not as fulfilling as real-life connections.

Therefore, my primary support system is myself and my art. As an artist, I am always artistically focused on visualizing my thoughts. Basically, my art is an endless monologue of me trying to explain myself to myself. Since my diagnosis, I have shifted my focus from photography to painting due to my vision problems, but I will return to photography someday. I now paint my symptoms, mainly the invisible ones, to help myself and others. By using symptom painting, I aim to raise awareness of our invisible illness and its complexities. I want others to see how much it impacts our daily lives, even if it is not visible to the naked eye.

#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?

Luckily no, I don't have difficulties walking at this time.

#5: How do you stay positive and motivated in your daily life? What do you do for self-care?

I stay positive and motivated mainly due to my art! My art series, called "A Thousand Faces", focuses on Multiple Sclerosis, and I have already depicted over 30 symptoms through my artwork. Each symptom has its own unique face, allowing me to personalize the experience and enable others to confront their illness. By visualizing the symptoms, we are better able to understand and empathize with what it feels like to live with MS.

#6: Your story and experiences with MS are incredibly valuable and can provide encouragement and motivation to others in the community. What words of advice or encouragement would you give to someone who is newly diagnosed with MS or going through a challenging time right now?

My words of advice would be that this is not the end, it's a new beginning.

#7: Have you started a business or mission related to MS? Can you tell us about it and what inspired you to take this step?

As I said, I'm an artist and I'm currently working on an MS-related art project, that I have big plans for in the future. But since they're in the future, I'm not giving more details on that just yet. Stay tuned!

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