If you have a rare disease, you probably have days when you think:
“I wish I had someone to talk to or email back-and-forth with… someone who understands exactly how I feel, and what I’m going through.”
Years ago, it wasn’t that easy to find support. Today, however, we have the glorious INTERNET! No more making a dozen phone calls, or writing letters and waiting for a reply by mail, when looking for a support group.
These days, you can, say, type Support for Cushing’s Disease, and up pops a list of groups specific to Cushing’s. I’m not kidding.
Click here if you don’t believe me.
We humans are social beings. I don’t care if you’re an introvert with your nose in a book, or an extrovert looking forward to a huge gathering; we all need human contact.
But when you’re not well, it can be difficult to make those connections, particularly if you have chronic pain, mobility issues, or if you live in a rural area where the cows outnumber the cowboys.
That’s why you should be aware of just how valuable it is to enter the words: Find a support group for <fill in the blank>.
It can connect you with people who share your health journey, and who may completely understand what it’s like to stop being invited to dinners because your symptoms meant you’ve had to decline so much in the past.
Another great search term is “Clearinghouse for <name of disease or condition>.” When you type in those words and hit search, you’ll be amazed at the resources available to you.
Support groups give people a safe, confidential space, either online or in person, where patients can share their frustrations, as well as their strategies for coping. There are even groups for family members, and often, they hold their meetings in the same facility at the same time so that families can travel together but then participate separately.
(I mean, who wants to share that they’ve been particularly irritated with a family member for whatever reason when that family member is sitting three feet from them? I know I wouldn’t do it.)
You don’t have to go it alone. There are people just waiting for you to join. They need you as much as you need them!
