By Jeannette –
I was inspired to write this blog because sadly, people with chronic illness, pain, and disability are often some of the most invisible and unrecognized people. I’d like to share what I see and what my experience has been in relationship with other patients, both as an advocate and what I have witnessed in their relationships with others.
In sharing this list, I hope those without chronic health conditions may learn to see beyond our limits and appreciate what we bring to the table, and I hope to remind those with chronic illness of their amazing worth.
1. People with chronic conditions are quick to put others first, despite their own pain.
I have seen time and again, patients whom I know are going through extremely difficult times, extend a listening ear and comfort to another struggling person. A person with chronic illness may not be able to get out to your party. However, we will be there to listen and hold your hand in your darkest hour.
2. Chronically ill individuals are not quick to judge.
Because we have been judged and stigmatized, we will simply be there with you as you journey. We will offer support, understanding, and encourage you to make your best choices.
3. People with chronic conditions are strong in their resolve to fight —
— both for themselves and their health as well as for others who are suffering. We have to be our own best advocate for effective treatment. While we are self-advocating, the majority of us are empowering others. Some do this informally in groups or on social media, sharing and encouraging on a more personal level. Other patients volunteer or are ambassadors with professional organizations and nonprofits, helping with program development, education and awareness, policy change and research funding. Although I am a licensed social worker, I have learned more about being an advocate through people with chronic illness and through organizations like U.S. Pain Foundation and Chronic Migraine Awareness, Inc and nonprofits like Migraine Mantras.
4. People with chronic conditions are compassionate.
We try to put our empathy for others into action, by reaching out to others who are hurting. I have witnessed beautiful acts of kindness, moments of one patient lifting up another even while they were struggling.
5. People with chronic conditions are gracious.
We are thankful for the simple things and that those things are very valuable. We hold dear things like moments with low pain, days when activity does not cause a flare, good friends who take time to understand and realize our worth, caregivers who are knowledgeable and compassionate, and laughter.
If I never had experienced chronic pain or chronic illness (not limited to Ehlers Danlos Syndrome, Chronic Migraine, Dysmotility, POTS, etc.) I would have never met such wonderful people. It is a blessing to realize the potential and worth of those with chronic conditions—all of us.
If you have a chronic condition I urge you to really reflect on your self worth and if you know someone who has a chronic condition make sure you are seeing them for all they are worth.