Dear Friend,
I’ve been thinking about you so much since you shared your recent diagnosis of MS. I know this probably feels like a lot – like the ground has shifted under your feet – and I wish I could be there in person to give you the biggest hug. Since I can’t, I wanted to write you this letter instead.
I don’t have all the answers (who does?), but I want to share a few things that I’ve come to learn about MS. Just remember, you are not alone. Not now, not ever. I am here for you, and so are your closest friends and family.
First things first, feel what you need to feel. There’s no “right” reaction to hearing you have MS. You might feel scared, confused, angry, or totally numb. You might cycle through all those emotions in a single day. That’s okay. In fact, that’s completely normal. Give yourself permission to feel it ALL. Cry, vent, sit quietly, scream into a pillow if you want. There’s no handbook for this.
And when you’re ready, know there are people – therapists, counselors, support groups- who can help carry some of the emotional load with you. You don’t have to go through this in your head alone.
My next piece of advice, and perhaps the most important, is learning to be your own advocate. I wish I could tell you that the medical system would automatically give you everything you need, but something you’ll have to do is speak up for yourself. You deserve doctors who listen, explain things clearly, and take your concerns seriously.
Write down your questions before appointments. Ask for clarification if something doesn’t make sense to you (even if you have to ask 3 times). Bring a friend or partner to help take notes if you’re feeling overwhelmed. Remember, you are in charge here!
As you may have realized by now, MS can be unpredictable, and it’s tempting to go into overdrive trying to control every little thing. You don’t have to. Focus on taking care of you and what replenishes your mind, body and soul.
If you’re tired, take a break. Fatigue is common and ignoring it will only make you more exhausted. And when you have energy and feel like moving, move in a way you know you can handle. Stretching, yoga, or just a walk can do wonders for your mood and energy. But listen to your body – some days it’s okay to do nothing at all.
I know “mindfulness” gets thrown around a lot but taking a few minutes to breath deeply or meditate can actually really help. You might be surprised how much it calms the chaos, even for a little while.
I know you’re strong, but no one should have to do this alone. Let me know how I can support you and let your other friends and family know too. Surrounding yourself with a support network can make this journey feel a little less heavy. Share what you’re comfortable sharing about MS and be honest about what you need. Maybe you need someone to help with errands, or just do the dishes. Or maybe you need someone to keep you company and sit quietly with you. Whatever it is, we are here for you.
Also, I can’t emphasize enough about finding an MS community. It helps so much to talk with peers who truly understand what you’re going through. There is My MSAA Community that is an online forum where you can connect with other individuals living with MS. It helps so much to talk with people who can relate to you and it could make the world of a difference.
The diagnosis doesn’t change who you are. Yes, it’s part of your story now – but it’s not the whole story. You are still you. You are still loved and capable of living a fulfilling life that brings you joy and happiness.
Some days will be harder than others, that is true. But you’re not walking this path alone. I’m here for you – whether you need a friend to vent to, someone to help research treatment options, or just a laugh on a tough day.
We’ll figure this out together.
Sincerely,
Courtney
