A letter to myself: Reminders for navigating life with MS

Dear current me,

Not that long ago, I wrote a letter to our younger self, newly diagnosed with relapsing-remitting multiple sclerosis (MS). That letter was intended to let her know that her diagnosis was not the end-all, be-all and wouldn’t take away from the beautiful and kind person she was — and still is. However, I feel you might also need some comforting and supportive words in this moment.

As you progress in your health journey, you have become more reluctant to express how you’re feeling and share the difficulties you encounter while trying to navigate the unknowns of MS. I’m not sure what happened that made you hesitant to talk about these things.

Still, it’s becoming more and more apparent as the days go by. It seems you’ve reverted to feeling the way you did after your diagnosis: hopeless, scared, and overwhelmed. That’s not to say that you haven’t always felt these emotions, but now, they’re consuming you like a rain cloud.

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You are tired, and it is evident. You are tired of constantly explaining yourself to people who don’t fully understand or care. You are tired of feeling limited, such as being unable to enjoy summer outdoors without being knocked down by long-lasting migraines, intense fatigue, and all-over body weakness for days at a time. You’re tired of the highs of feeling great one moment and the lows of feeling awful the next.

The main symptoms that have presented in recent weeks are dizziness and lightheadedness. One moment, you are present and living in the moment, and the next, the world is spinning by you. These episodes can last anywhere from minutes to hours and happen out of nowhere. They make you feel hopeless because nothing can help.

I know you try to push through, but this is your reminder that it’s OK to stop and sit when your body asks for it. You don’t have to try to overcome your symptoms, because that always backfires. Knowing your limits is a sign of strength and courage, not weakness.

I am here to let you know that your exhaustion is valid and completely understandable. It can be easy to feel isolated on your MS journey, but you’re not alone. You have an army of people standing behind you, ready to support you through any hardship you face.

Don’t be afraid to talk to your support system about your challenges and emotions. They will never abandon you, no matter how dark the days get. So many people love you and care for you. You were never meant to navigate MS by yourself; all humans need connection and support.

With all my 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.