Learning to live with chronic illness and manage work, home and family can be isolating. All parents are tired and overworked, but adding a layer of chronic illness to the mix makes new challenges pop up regularly. Parents living with rheumatoid arthritis, how do you tell your work you have another doctor’s appointment? You’ve used all your sick days for your appointments and your kid is sick. How do you explain to your kids why you can’t do things sometimes?
Being diagnosed with Rheumatoid Arthritis, Cardiac Syndrome X, and Venous Malformations when both my kiddos were under 5 was an adjustment for my entire family. Learning my new normal while trying to keep up with regular family responsibilities took several years to figure out. I was lucky to have a few online friends with chronic illness and we were able to help each other out (and vent).
By new estimates, 1 in 3 people age 18-64 have arthritis, that’s 54 million Americans, including 300,000 children. My story is not rare, yet there are very few resources available for young people living with arthritis. If I told people I had Rheumatoid Arthritis, it was either “you’re too young” or people downplaying the severity of the disease. It felt awkward reaching out to healthy friends. But luckily, I was finally able to find my support system.
How to Connect with Other Parents Living with Rheumatoid Arthritis
I recently joined the Arthritis Foundation’s Live Yes! Arthritis Network to broaden my connection to younger people living with Rheumatoid Arthritis. The Live Yes! Community provides personalized help and support to adults living with all types of arthritis and rheumatic conditions and parents or guardians of children living with arthritis. Their programs offer opportunities for connection, education, and empowerment via Live Yes! Connect Groups, an online community and conferences.
With the rapidly changing conditions of COVID-19, it’s so important to stay connected with resources that specialize in the immuno-compromised, and finding true friends that understand the complexity of chronic illness. My biggest concern with all the major changes going on in the world is how it will affect the chronically ill, physically and emotionally. But I can assure you that there’s someone in the Live Yes! Community who understands what you’re going through.
In addition to providing connection to others with arthritis, the Arthritis Foundation is making sure that those of us at a higher risk for developing COVID-19 are getting accurate information and access to resources that we need during these times. They are debunking myths and sharing trustworthy news, tips and resources to keep you and your family safe and healthy. Learn more and stay up-to-date with coronavirus news from the foundation here: https://www.arthritis.org/care-connect.
Order online and check on your friends
There are other steps that you can take to keep yourself and loved ones safe. Make use of online services. Order your groceries online, ask your pharmacy to ship your medicine directly to your house. There are a ton of great meal prep and meal delivery services available online. Local small businesses are offering online ordering with porch drop off. Order take out from your favorite restaurant and have it delivered to your house.
And most importantly, I would encourage you to find an online support system. Whether it is a forum like the Live Yes! Arthritis Network, an online therapy company, or just a trusted friend that you can keep in touch with. It seems like phone calls are a thing of the past but with social distancing, it would be great to make a point to call a chronically ill friend or elderly person in your community once a day and check-in. Did you take your medicine? Are you feeling okay? Are you feeling depressed? Something as small as a phone call can be a lifeline to someone isolated. And always remember that it’s okay to ask for help for yourself, too.
If you are living with immunosuppression let me know how I can help. I am always here to chat.