If you were alive in the 1980’s, you may have heard G.I. Joe impart this important piece of wisdom at the end of an episode:

“Now you know…and knowing is half the battle.”

The other half of the battle—as anyone living with a chronic disease like graft vs. host disease (GVHD) knows—is what you do with that knowledge.

Understanding Advocacy

An advocate, by definition, is someone who champions a cause, or promotes the interest of a group around a shared cause. In the context of GVHD, it’s using what you know about yourself and your disease to better not only your own life, but the lives of thousands of others living with it, too.

Advocacy can take on many different forms, and all are incredibly important in their own way. You can advocate directly for yourself and others, for example, or you can support an organization’s advocacy efforts by donating to them financially, or helping them raise awareness through a campaign or fundraiser. You can also advocate for a cause on a national level, in an effort to affect healthcare policy or secure research funding.

With a disease like GVHD, there’s no shortage of ways to get involved and use your voice to affect meaningful change.

Advocating for Yourself

When you’re living with GVHD—a complication of stem cell transplantation in which the donor’s immune cells attack the recipient, or host’s, cells—every day can quite literally feel like a battle…and it can certainly feel overwhelming.

But remember this: you hold the power in this dynamic, not the disease. By being vigilant and monitoring for symptoms, understanding the disease and its available treatments, finding the best doctors and clinical trials, and standing up for your needs day-to-day, you’re doing everything you possibly can to ensure you’re in the driver’s seat—and that’s extremely powerful.

Here are some tips for how to advocate for yourself:

You’re the ultimate expert on you.
Doctors, caregivers, loved ones, and friends can all be excellent sources of advice, but don’t lose sight of the fact that you’re the leading expert on you; you know you best. No one else is living with your disease day to day, and no one else knows exactly what your symptoms feel like besides you. You are your own best advocate, and honestly relaying your desires, feelings, and needs to both your care team and family and friends is essential. Whether speaking up in a doctor’s appointment or asking for necessary accommodations at work, people only know what you need if you tell them. If you notice a new symptom, be sure to report it to your care team immediately—never suffer in silence. Treatment is always most effective when started right away.

The more you do it, the easier it will become.
Speaking up about your needs isn’t always easy, and it can be especially difficult for someone who doesn’t like to ask for help or be assertive. But, like anything in life, the more you practice speaking up and advocating for yourself, the easier it will become. It will almost certainly feel uncomfortable at first, like most new things. Just keep reminding yourself that with practice and repetition, it’ll soon become second nature…and you’ll be better off for it! It’s an important way to take the power back in what can often feel like a powerless situation.

Your doctor and care team WANT (and need) your feedback to direct care.
Again, only you know how you’re feeling, and your doctor cannot recommend the best course of action without your input. Some people may feel that it’s “not their place,” to question the care they’re receiving, or feel uncomfortable pushing back on something they disagree with, but ask any (good) doctor and they’ll tell you that they welcome it. They want you to take an active role in your care, and shared decision making—meaning making decisions related to your care and wellbeing alongside your healthcare team—is a tenant of good medicine. If bringing up questions or concerns during your doctor’s appointment feels daunting, try talking to the nurse or care coordinator first instead. They can help relay information directly to the doctor on your behalf.

Take someone with you.
If you’re feeling intimidated by the thought of facing a doctor’s appointment, test, or treatment alone, ask a trusted loved one or friend to go with you. Having their moral support—and an extra set of ears to listen, take notes, and ask questions—will relieve some of the pressure from the situation.

Ask questions and state your goals.
Whether you’re talking to your doctor or other members of your care team, presenting questions instead of statements can be a helpful way to promote conversation and keep it from feeling confrontational. You might ask things like, “Please help me better understand ____….” or “What about ____?” Sharing your goals with your care team is also important, as it gives them a starting point to work from and helps them better understand your needs and desires so they can direct care accordingly.

If you’re ever made to feel like you don’t have a say in your treatment, or like your opinions or wishes are dismissed by a healthcare provider, it’s likely time to look elsewhere for a different practitioner. The BMT Infonet directory is a great resource to locate care near you: https://bmtinfonet.org/gvhd-directory.

Educate yourself on your disease and the available treatments.
The more you understand your condition and the treatments and clinical trials available to you, the easier it will be to advocate for yourself and your care, and the more productive the conversations will be between you and your healthcare team. Appointment time is often limited; going in prepared ensures there’s plenty of time available to talk about the things you most want to discuss.

There are excellent resources available through organizations like the GVHD Alliance to aid you in taking a deeper dive into the disease and its treatments. Learn more at https://www.gvhdalliance.org/resources/.

Advocating for Others

Sharing the knowledge you possess about GVHD and your personal experience with the disease has a multitude of benefits, both for you and those in your sphere of influence.

Sharing your story helps others finds strength.
The power of shared experience can’t be overstated in the context of a chronic illness. Being diagnosed with something like GVHD can feel scary and isolating, and it’s incredibly comforting to be reminded that you’re not alone. Whether you’ve been recently diagnosed or have been dealing with the disease for years, finding others to encourage and share your challenges and victories with is healing for everyone involved. You can find GVHD support groups here: https://bmtinfonet.org/support-group-list.

Tackle the “knowing” side of the battle.
By opening up about your own diagnosis and what you’ve learned through it, you can help people better understand an often-misunderstood diagnosis. Despite the fact that GVHD affects up to 50% of people who have received a stem cell transplant, knowledge of the disease is still lacking in the general population. If we all work to educate those in our networks, pretty soon GVHD will be better understood…and with more understanding and awareness comes higher detection rates, better outcomes, more resources, and more research funding.

There’s an entire section on the GVHD Alliance’s website devoted to resources that advocates can use to help educate others on the disease: https://www.gvhdalliance.org/resources/

Advocate as a caregiver.
A caregiver to someone with GVHD provides support in innumerable ways—and that includes advocating on their behalf. Whether attending doctor’s appointments or accompanying someone to treatment, your first-hand experience with the patient and their disease affords you the opportunity to support them and speak up in uniquely meaningful ways.

Support GVHD organizations.
There are numerous organizations devoted to GVHD, and they all need your support to carry out their missions of rallying around survivors, raising education and awareness, and funding research. Whether you feel led to give financially or simply want to back them with your voice and action, your support means the world! Sharing and interacting with posts on social media is an easy place to start, especially on GVHD Day.

GVHD Day is the perfect time to advocate!

Whether you’re someone living with GVHD, a caregiver, or an advocate wanting to help raise awareness, join us in sharing about GVHD on your social media accounts on GVHD Day—February 17th—using the hashtags #GVHDday and #GVHDalliance, and tell people what you want them to know about GVHD!

There’s lots of resources and ideas of what to share at https://www.gvhdalliance.org/gvhd-day/.