Many of us are either directly affected by or have loved ones who are affected by chronic health conditions. This is in fact, a sign of better healthcare from previous generations when most chronic health conditions were once fatal and not as understood.

Living day-to-day with a chronic condition is still a struggle however, with limited or lacking resources. We must learn to adapt as individuals while also helping influence the culture, society, and legislature to be more inclusive for all. Sometimes simply by existing.

So, what can we do to lighten the burden? Here are a few tips I’ve learned since my own rare diagnosis in 2016.

Coordinate Care with your PCP

A trusted Primary Care Physician is crucial. They may not know much about your specific condition, but they will go to bat for you with the experts who do. They are the central resource for referrals and coordination of care. If you’re having trouble finding a good PCP in the general health system, consider a Direct Primary Care doctor if you are able.

Be your own Advocate

Don’t be afraid to question a doctor or specialist’s directives, seek additional opinions, and ask any questions no matter how simple they seem. The right providers will lead you toward proper resources and education.  They will explain things in a way that is understandable to you — if something is over your head, push for a more digestible explanation.

Write it Out

Always ask for a copy of your health records. Compile a file of your own history to document everything from diagnosis to treatments and outcomes so far. Also, having a list of questions and/or updates for each appointment is useful too. Handwritten, typed, or on a mobile notes app; whatever works best for you. When I was tired of filling out the redundant intake forms, I started bringing my own typed out medical resume.

Copay Assistance

Many specialty and high-cost medications have in-house or 3rd party copay assistance programs. If you’re extra lucky, your provider will automatically apply to these for you when starting a new treatment.

Volunteer

Chronic conditions often leave us with limited energy and we must pick and choose what to accomplish in a day. So where can volunteering fit? Studies, research, and Clinical Trials! You may even get paid! Check out Rare Patient Voice to sign up for research opportunities. Also look at clinicaltrials.gov to search for trials worldwide.

Set Expectations

Personal and Professional expectations are both are tricky to juggle at the best of times. Professionally, don’t be afraid to ask for accommodations, such as staggered work hours; It is your right. You can disclose as much or as little health-related information as needed; doctor’s notes are the best leverage. Personally, let family and friends know your limits, which can be subject to change based on your continued health journey. Again, you can share as much or as little as you’re comfortable with. A friendly reminder to all relationships; just because it’s not visible doesn’t mean it’s not there. Keep relationships that are beneficial, and don’t waste precious energy on those that are not. A good rule of thumb here too is don’t apologize, thank: “Thank you for working with me on this.”

Seek out Community

The rarer your illness, the more online that may be. Facebook, Instagram, or whatever social media you are plugged into can be a wonderful resource for connecting with individuals going through the same thing. It brings people together and provides great insights which can in turn help advance your care with your providers. Being seen, heard, and understood is a wonderful thing.

Trust your instincts

Lastly, it is important to remember there is a lot of advice out there. Even the most well-meaning and ‘proven’ recommendations might not be a fit for you. Follow what feels right for you where you are now in your journey.

Resources:
Rare Patient Voice
ClinicalTrials.gov
Rare Disease Advocacy Tools
Autoinflammatory Arthritis Awareness

Written by: Justine Brown