Ah, technology . . . where would I be without you? Confused, scared, feeling alone and probably in more pain is where I suspect I would be without technology. Social media and Dr. Google both get a bad rap for many things these days but for learning about and connecting with others with chronic illness, they really are amazing tools.
In the first days of my illness, I had no idea how to cope or what might happen to me. Just one symptom, vertigo, left me feeling completely isolated. I found a group for people with vertigo and suddenly I was no longer alone. The tests were no longer overwhelming or scary. Someone else had already been there before me and had lived. Imagine that!
Next I received the psoriatic arthritis diagnosis. There were so many well meaning people around me who said things like, “you are too young for that,” or “oh, I’m sorry, my family member had that and had to be in a wheelchair or couldn’t use their hands.” Isn’t that is exactly the kind of thing you want to hear when you have just been diagnosed with a chronic illness. And the dozens and dozens of cures people me told to try, well I could probably write a book just about those alone. I might have gone crazy.
Reputable websites helped me sort out those things. Oh sure, there are snake oil salesman on the internet. Like the commercial says with tongue in cheek, “they can’t put anything on the internet that isn’t true.” I keep that in mind and stay away from websites that can be verified. Reputable and verifiable means having a physical building or magazine or network of doctors and people. Maybe other reputable sites that link back to it and use the information or other networks that refer you to the site. If you have heard of the website outside of the internet, then it might be a good one.
Good websites also provide many tools. Medication trackers, allergy trackers and information, medication guides and interactions, pain trackers and guides besides care guides for your condition or illness. They go beyond the standard description of an illness and point you to recipes, coping and connecting with other people like you.
Then we have the simple connecting with others. I can’t even imagine how different my life would have been had I not reached out through the web. I think I would have spent so much more time feeling isolated and very depressed. I made read real connections with real people through groups, message boards and now all kinds of social media. Those connections were more valuable to me than the nurse in my doctor’s office on a daily basis. I have made real friends.
I have a portable TENS unit that I wear to help with pain. All my ostomy supplies are neatly listed online and I can view my previous orders, see new items and get reminders for my next order. I have applications on my smart phone for exercises, notes, health information and medications. We have blood pressure and blood sugar monitors. I have used biologic medications that I injected myself that came in one-time use pre-loaded syringes, no mixing, and no drawing up necessary. We have so much new technology exploding it’s truly incredible. I’m always amazed with what is happening next and yet at the same time disappointed that with all the advancement there hasn’t been more progress for autoimmune diseases and chronic pain. Researchers and biomedical engineers, please keep at it.