9 Things to Know After Diagnosis
By Chris Anselmo
When I learned I had a rare disease, I had no idea how to face what came next. Here are 9 things I wish someone had told me after my diagnosis:
1. Ask for help.
Life is about to change in a major way.
For various reasons, you’ll want to do everything yourself or withdraw from those around you.
But isolation makes everything so much harder.
The sooner you reach out, the sooner you can receive support.
2. Find role models.
Find other patients with your disease. If you can, reach out to them. Learn from them. Ask questions about what they would (or wouldn’t) do differently.
If you can’t find anyone, there are so many great mentors in the rare disease community who can offer useful advice.
Everyone's symptoms might be different, but we all face similar emotions and challenges.
3. Be the friend you deserve.
It’s easy to lament your situation.
To blame yourself for missteps.
To compare yourself to your healthy peers.
To work yourself to exhaustion seeking answers, fearing that if you stop, you might leave a crucial stone unturned.
Think of what you'd say to a friend. You'd lead with love, but also tell them to go easy on themselves.
You deserve the same.
4. Find your purpose.
Faith, family, friends, meaningful work -- whatever it is, find something the disease can’t touch, something larger than yourself that lights a fire inside you.
5. It’s okay to talk to a professional.
Therapy is a sign of strength, not weakness. Everyone benefits from having someone to talk to, who can listen objectively and validate your emotions.
6. Separate out what you can/can’t control.
You’ll be tempted to chase your tail trying to change what can’t be changed. Or the opposite, to surrender your power and assume everything is hopeless. Take time to figure out what’s in your control (advocacy, fundraising, advancing research, mentoring, etc.) and focus your energy there.
When you stop trying to control everything, everything changes.
7. Grieve for as long as necessary.
A diagnosis is a form of grief.
The life you thought you’d live. Future dreams. Your health. And for some, life itself.
Grief takes time. It’s messy, and doesn’t follow a set timeline. Don’t feel pressured to “bounce back” quickly, or worse, deny that you’re grieving in the first place.
8. Your diagnosis isn’t your whole life.
I’m not denying it’s hard, or that your life won’t revolve around the disease in some way. It will take up a lot of time and energy.
But there IS more to life than the disease itself.
Find a hobby. Pursue your goals and interests. Be open to enjoying life in creative ways.
This is where having role models really comes in handy. They can show you what's possible.
9. Laughter is a lifeline.
It’s so easy to stop laughing when life gets hard. But if you can, find a reason to laugh each day, even if it’s dark, morbid humor.
Laughter lightens the heaviness just enough to function.
Acerca del autor
Chris Anselmo is a writer, coach, and rare disease advocate living with limb-girdle muscular dystrophy type 2B, also known as dysferlinopathy. Through his newsletter, Hello, Adversity, Chris writes about resilience, mindset, and the realities of navigating life with a rare disease. He is passionate about helping others find meaning, take action, and move forward in the face of uncertainty. Chris holds an MBA from Boston College and a bachelor’s degree in marketing from Northeastern University.
