You have a chronic condition (or two, or three...) and you’ve done your part to raise awareness: you have the ribbons, a decal for your car, have walked at charity events, and helped out at other related activities.
But now you’re ready to take it one step more: advocating on Capitol Hill. You want to bring the message of awareness — and all-vital funding — about your illness to Washington, D.C., so that those in government can help.
Many health groups organize advocacy days on Capitol Hill, including Headache on the Hill, run by the Alliance for Headache Disorders Advocacy, which features patients and doctors from the migraine, cluster headache, and headache community. They go to Washington, D.C. every February and visit the offices of their legislators, advocating for headache disorders. Other chronic illness organizations host advocacy days too, including in cancer, multiple sclerosis, and diabetes.
Keep in mind that you don’t have to travel to Washington, D.C. to take part in advocacy: you can advocate at the local and state level too. Many organizations, such as the National Psoriasis Foundation, can provide more information on how to take part closer to home.
But if you are headed to Congress — also known as Capitol Hill — what should you know before you go?
1. Choose the right clothes
Dress professionally, says patient advocate Candace H. Lerman.
“I can't tell you how many times I've seen people on the Hill in jeans and a T-shirt,” she says. “You never know who you will bump into, and first impressions count.”
Washington, D.C. can be a conservative town, fashion-wise, especially on Capitol Hill: you’ll see men in dark suits and women in dark suit-equivalents. Don’t have a business suit? It’s OK. Just dress in the nicest clothes you have. Is your group wearing the awareness colors of your disease or special clothing for your appointments around Capitol Hill? It’s fine to wear those, too.
Keep in mind that it’s cold in D.C. in the winter outside and cold in D.C. in the summer inside (thanks to air conditioning). So dress in layers that you can remove to either add warmth or take it away, especially if your chronic condition, like psoriatic arthritis, can be worsened by cold.
And keep your attire simple: limit jewelry, awareness buttons, or any metal on your body because each time you enter and exit a government building, you’ll need to go through a metal detector. If you’re running short on time (or have a long line behind you, waiting to get in for their own appointments), you’ll be happy you did.
2. Comfortable shoes are everything
Advocating on Capitol Hill means you’ll be in one of the six congressional office buildings: for senators, the Russell Senate Office Building, Dirksen Senate Office Building, and Hart Senate Office Building, and for house representatives, the Cannon House Office Building, Longworth House Office Building, and Rayburn House Office Building. Offices will be scattered around in these different buildings even for lawmakers from the same states, and you’ll likely be walking across Constitution Avenue and other streets in the area for your meetings over and over again.
“Comfortable shoes are a MUST!” Candace says. “Stilettos are not meant for the Hill. I see a lot of first-time women advocates make that mistake and end up hobbling around after an hour.”
If your condition has a focus on feet and shoes, like diabetes, you’ll want to wear the shoes you need to on a regular basis. Casual shoes are OK: wear shoes you’ve worn in and don’t cause blisters.
3. Know what to bring (and what not to)
- Paper and pen. For taking notes the old-fashioned way, to use when following up with congressional staffers.
- Your cellphone. Especially for staying in touch with anyone you’re advocating with and to take pictures of yourself advocating. Share those photos on social media with relevant hashtags to help raise awareness.
- Your “leave behind.” This is the document that advocacy day organizers typically give you to leave behind with staffers as a reminder of your visit, with relevant information about your “ask.” An ask is what you're requesting goverment officials do. You can also make your own, called a one sheet: “It's a one-page summary of what you're asking for,” according to Candace. “I encourage advocates to put a picture on it, those generally get more attention.”
- Your business card. “It's easier to exchange information that way” with staffers, Candace says. Don’t have one? You can make one affordably many places online.
- Snacks. Have a dietary restriction? Make sure to pack snacks you can eat.
- Water bottle.
- Necessary medication. These can serve as a great teaching tool to show staffers how you need treatment close by because of the seriousness of your condition.
- And... little else.
Make sure you bring it all in an easy-to-carry bag that isn’t too big for small meeting rooms and full elevators. Roller bags are OK too, especially if you have chronic pain and don’t want to overtax your body.
Don’t forget: a day of advocating is long. Anything you bring has to accompany you throughout the day. Don’t pack whole meals, either, as there are places to eat in the Capitol when you have a moment, and it’s easier than carrying around too many items through the halls of the Capitol buildings. But if you have a chronic condition with food triggers, like with migraine, make sure to bring food you can eat.
4. Eat when you can
Speaking of eating: eat when you can and make sure you eat breakfast. You’ll usually have multiple meetings with staffers throughout the day, so it’s best to squeeze in food whenever possible. We know the drill with chronic illness, including with migraines: we need food on a regular basis, and hydration, because sometimes the exertion and lack of food can trigger an attack.
5. Respect staff offices
You’ll find the name of your senator or representative outside the door of their office and once inside, you’ll typically find a room or space with a front staffer directing operations from a desk, who you’ll notify that you’re there for a meeting. There’s usually a couch or chair to wait on. Sometimes there isn't, and all you can do is stand; keep this in mind if you have chronic pain and difficulty standing for periods of time.
Respect that business is being conducted in this office, and that advocacy groups might have come in before you and will leave after you. Treat the office with the same respect that you would your doctor’s office: don’t leave behind trash, don’t talk loudly, don’t talk opposing politics, and be aware that others are doing work.
6. Use the best option to get around D.C.
You can walk, take a cab (including an option if you need handicap access), a bicycle, the Metro train (which offers accessibility information for wheelchairs), and buses like the DC Circulator. Use a rider app like Uber or Lyft. Need a wheelchair rental? Check out Scootaround, which rents them in the city.
7. Budget your time wisely
One thing all visitors should know about D.C.: the traffic’s as bad as you might have heard, and was ranked the sixth worst city in the U.S. for congestion behind Los Angeles, New York, San Francisco, Atlanta, and Miami, respectively, in a 2017 study. Twenty miles might take you 20 minutes or an hour, given the time of day and location.
When you’re headed into the city for advocacy, be sure to budget more than enough time to arrive if you go alone. If you go with a group, be sure to respect their pick-up times, even if they seem early. That extra time is likely needed in the car-congested region.
And then once in the halls of government offices, know that distances are long. Check your map and do your research to budget your arrival and transportation times around the halls of Congress wisely.
See more helpful articles:
From ‘Living to Die’ to ‘Dying to Live,’ Colon Cancer Survivor Shares Her Journey to Patient Advocacy
Patient Advocate Couple in Headache Community Advise Speaking Out, Taking Part
Rare Disease Advocate Recommends Patients Advocate for Their Disease —
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