There’s nothing quite like hearing others share stories of empowerment, overcoming challenges, and making a real difference to make you feel inspired. On Monday evening, we hosted our Advocating for Others webinar with Health Activists Janeen and Marla – and I learned so much from these powerful parents. In our community, we often focus on patient Health Activists, but there is a group of dedicated, passionate leaders who have followed a similar path – through caring for someone else experiencing a health condition. This month we focused in on this particular group of advocates and our webinar was a wonderful way to tie up the month on a positive note.
Though Marla and Janeen each bring different skills for overcoming challenges in the world of caregiving Health Activism – there was a lot of common ground and advice that could apply to anyone in a caregiving position whether you’re caring for your child, your spouse, or someone else you love. Here are my top take-aways from the webinar:
- Educate yourself first. When facing the diagnosis of a loved one, learning as much as you can is the first step. By investigating on your own, you’ll become more confident about your new role as caregiver and be able to be the best advocate.
- Your story can inspire greater awareness. Marla said that, along the way as she learned and highlighted her son’s potential and achieved milestones, this was an excellent way to open up the conversation and educate others about special needs.
- You know your child or loved one – be ready to step up and speak for them when you face the world outside. You may be uncomfortable at first – but you will grow into this naturally.
- One of the biggest challenges is having others understand and making sure they are respectful of you and your choices as a caregiver. Don’t give up. Find people who will support you. Whether that’s family or friends – find people who understand, can give you what you need, and will be able to help you get things you need to in life.
- Put on your oxygen mask first. Remember, you need to keep yourself in mind. It can be easy to fully immerse yourself in caregiving and neglect your own needs – be aware of when this may happen. Find time for yourself when you can. Pursue your passions. Use your creativity when you can. Connect with others and be social. This will ground you and keep you from becoming overwhelmed. Find stress-relievers that work for you. Schedule it in and pursue what makes you happy. Date nights! Outings with friends! Take time for yourself when you can.
- Connect with others online – share anecdotes, facts, and what works for you – this could really help other people and, by talking to them, you could learn from them. The online community is the best way to connect. No matter where you live – you can find others who have stories and experiences that you will relate to. Use this and take comfort in everything you can learn there.
- Anyone can be an advocate. No one is really prepared at the beginning but anyone has the ability to get there and be involved. You don’t even need to have a loved one in the community for you to be an advocate for that community. You will grow into your advocacy. You will find a way, no matter your personality, to be an advocate. Especially if you’re speaking for someone you love or doing something you love.
- Don’t stop. If people aren’t able to support you and give you what you need – gravitate to those who will. Don’t get discouraged when it gets tough. Look for opportunities to educate, even when it is tough. You can sometimes turn ignorant off-hand comments into the chance to educate and start a conversation.
And, in summation, we asked our panelists: if you could only give one piece of advice to a new caregiver or parent, what would that be? Here’s what they said:
Marla: Take it one day at a time.
Janeen: Trust yourself. Know your child or loved one. You know what’s best. Go with your instincts.
Such great advice. Stay tuned for the archived webinar so you can watch the presentation! And I will be posting a more in-depth recap as well.
And here are the slides from the webinar for you to check out. Feel free to use any of the topics to start a conversation in your own community or blog. And check out the resources on the last few slides that Marla and Janeen recommend to new parents or caregivers for the Special Needs, Down Syndrome, Food Allergy, or Asthma communities: