If you have a chronic disease, like rheumatoid arthritis, you talk and think about it, a lot. It tends to work its way into every conversation, even if you purposely are avoiding mentioning it. Activities are planned around how well you’re functioning and even when you insist on pushing forward, your family knows better, and sometimes calls a stop.
I am extremely fortunate to have a husband and two children that understand my limits and care for me when I can’t care for myself. They see right through my endeavors to hide my disease. My children know the look on my face that means “please ignore what I’m saying and bring me an ice pack”. They check on me before they fall asleep (this 37 year old is in bed early!) and make sure I don’t need anything.
Last May, for Arthritis Awareness Month, I decided to interview my husband (click here to read) for my blog and when my daughter found out, she insisted on answering questions about my disease as well (her answers can be found here).
Why interview them via email/paper and not in person?
- I’m emotional. Mention that my disease upsets you and I’ll get teary. I didn’t want them to withhold saying anything for fear of me getting upset.
- I try to spend the least amount of time talking about my disease with my family- yes, they know how I’m doing, how doctor’s visits go, etc. but I don’t want to dominate the conversation.
- I wanted their answers, in their words. I simply copied and pasted into my blog post.
This March, we want to learn about your support team and help you to show them what you need and for them to get the information and support they deserve. And who is your support team? Your support team can be your spouse, your children, your grandchildren, your neighbor, your friend, your co-worker, your personal trainer at the gym. In my opinion, a support team member is just that, someone who provides you with support. Someone you lean on from time to time.
Below are the questions we encourage you to ask, email, text, or print out for someone in your support team. Feel free to add in your own questions and tailor them to the relationship you have with the person you’re interviewing.
- Do you understand my disease? Do you have questions about it?
- How would you explain my disease to others?
- What do you perceive as the worst part of living life with my disease?
- Do you ever feel frustrated or angry that I have a chronic disease?
- How has me having a chronic disease affected your outlook on life?
- Is there anything you miss from before I was diagnosed?
- How is/will your life be better because of your first hand experience with a chronic illness?
- Are you ever scared that our children will develop a chronic illness because they have my genes?
- Or are you ever worried that you’ll develop a chronic illness because you’re related to me?
Please save your answers and mark your calendars for our next #CreakyChats on Twitter, Monday, March 6th at 6pm EST. We’ll discuss as a group what you discovered during your interviews.
I also encourage you to share what you learned with me via email: [email protected]. I’d love to help make sure your support team has the resources it needs and that you have the tools to support your own team, when you aren’t feeling that great yourself.