Adjusting to a “New Normal”: Advice for Adults Newly Diagnosed with a Rare Disease

Receiving a rare disease diagnosis as an adult — sometimes referred to as a late-onset diagnosis — can present a unique set of challenges and questions for a patient. So, we asked our rare community to share pieces of advice for someone in that exact position. We hope these little nuggets of wisdom from people who have been there can help you navigate your “new normal” and find acceptance on your rare disease journey.

Here’s some advice that’s actually helped people with a late-onset rare disease diagnosis:

1. Prioritize your energy.
   

Receiving a rare disease diagnosis as an adult can be complicated and confusing – and finding the energy (and time!) to manage that condition while balancing your other responsibilities can feel near impossible. 26% of Mighty members noted the importance of prioritizing your energy after your diagnosis – like learning how and when to conserve it, or deciding when to take a break or a nap. Be patient and gentle with yourself as you learn more about your condition and how it impacts you.

“If you live with other conditions, try not to put ALL of your energy into your rare disease. When I was first diagnosed, I put blinders on to the rest of my illnesses and that neglect made symptom management nearly impossible for a long time. It’s a tough balance to strike, but the future version of yourself will thank you.” — Kat H.

“Be gentle with yourself. Aging presents its own set of challenges. Additionally, a rare disease further complicates life. Hold fast to your dreams, but learn when to compromise and when to customize. I know that my fatigue and pain are great when I don’t even make plans to go to an event.” — Deb Ann P. 

2. Grieve who you were before your diagnosis – it’s natural (and sometimes necessary!). 

We heard that receiving a rare disease diagnosis as an adult can come with an overwhelming sense of relief – especially for those who have been searching for the validation of a label after years of unanswered questions. However, that diagnosis can also feel harrowing and scary: maybe you thought that you’d never get one, or you weren’t expecting to receive one when you visited your doctor that day. 16% of Mighty members said they would advise those newly diagnosed to take as much time as they need to grieve who they were before their diagnosis or symptom onset. It may take time to adjust and find acceptance.

“Give yourself grace — and lots of it, along with time to adjust and adapt. This new diagnosis may impact parts of your life or feel like it overturned your entire life. Either way, it’s a grieving process to lose parts of life you no longer have control over. And that is OK.” — @chronicpain12

“Being an adult does not mean that you’re going to just know how to ‘handle it.’ It can take a long time to adapt to how your life changes with your condition, and you never really stop mourning your ‘before life.’” — Erin V. 

3. Become an expert in your rare disease.
   

51% of our community members said researching their rare disease and learning as much as they could about it really helped them navigate their new diagnosis. Learning about their condition, its signs and symptoms, treatment options, and experiences of other patients can make your condition feel more manageable. Many Mighty members also stressed the importance of learning how to communicate what you’re experiencing and what you’ve learned with others.

“It was important for me to find out what I had and how it would impact my life. I think doing the investigation — reading everything I could — was my way of getting through the grief. Then, I found out there are a lot of people who do not know much about medicine, especially the unusual ones! And that includes medical people too, which encouraged me to learn the ins and outs of my condition [as well as] its treatments.” — @star619

“My biggest recommendation would be to think through an elevator speech for your disease. It sounds strange, but I underestimated how many times I would have to explain it to people in my life, doctors included. Think of a way to summarize it (I like to mention the most debilitating symptoms) and also to touch on the difficulty of care/treatment. It’ll save you energy and frustration in the long run!” — Kat H.

4. Find your people.

Whether family and friends, a patient-led support group, a specialist, a therapist, or faith-based community – finding people who get you (and what you are going through) can be important. 49% of Mighty members recommended finding someone who “gets it” and can provide the support that you need when you need it.

“Seek support through an online community for [people living with] rare disease as well as counseling. A rare disease isn’t just a physical challenge, but is also an emotionally hard adjustment that can easily leave one feeling isolated. This combination of support is life-changing.” — Jenny J.

“Seek out a support group… your disease may be rare, but you’re not the only one. There are others with [the] same or similar struggles.” — Deborah B. 

5. Trust yourself – and don’t be afraid to self-advocate.
   

You know yourself better than anyone – even better than your loved ones, your health care team, and well-meaning people on the internet. That’s why trusting yourself and your body – even as it changes with age and time – is so important. 30% of our rare community said that advocating for themselves (or finding someone who can help advocate on their behalf) was an important step in their late-onset rare disease journey. You want to feel like you are being heard and are a valued member of your health decision-making team. If you don’t feel like your support team listens to you, it’s OK to seek out another opinion!

“NEVER stop advocating for yourself. If something doesn’t feel right or comfortable, speak up. You know your body better than anyone.” — Nicolette D.

“Find someone else to advocate for you when you’re too sick. It’s so helpful to have someone with you at appointments who knows their stuff and can actually help you get good care, especially when you have brain fog and pain, etc.” — Shenandoah J.

6. And finally, don’t forget to laugh!
   

15% of our Mighty community noted how much having a sense of humor helped them cope with receiving a rare disease diagnosis as an adult. Finding ways to laugh, have fun, or even just distract yourself from your symptoms can make a huge difference in your daily life. Whether you invest time in a hobby or activity you enjoy, spend time with your loved ones, or prioritize your mental health – we know that laughter and joy won’t solve everything, but it may make things a bit more palatable.

“Try to keep your sense of humor handy.” — @star619

“Develop a good sense of humor. You are going to end up in some [weird] situations. Learn to laugh about it.” — Kevin K.