It’s funny how you can sometimes be surrounded by people who love you and still feel all alone. Every diagnosis is a trauma that comes with residual physical issues, and no matter how many people want to help and support you, in the end it’s your body and all the decisions and their impacts are yours.
I have been reminded recently that when you are a chronic patient, one of the most dangerous feelings you can have is that you are all alone. I am lucky. When I got my latest diagnosis, I felt that way, but it was brief, simply because I have gone through the process so often.
In my experience, there are two main ways that feelings of isolation as a patient can get bad. One is when your condition is flaring and you don’t want to be around people. Maybe you don’t want anyone to see you that way. Or, like migraine patients, you literally need to be alone to make your condition better. I remember how embarrassed I was once when some friends saw me during an extreme low blood sugar. I was waiting for them outside a movie theater for the first show of the day and no one else was there yet. By the time they got there, I was sitting on the sidewalk, propped up by the theater wall behind me. I sent the first friends to arrive across the street to the CVS for any kind of fruit candy they could get (all sugar, no fat to delay absorption). I couldn’t walk on my own, so when the other friends arrived, they each took an arm and took me to a restaurant next door. We decided it was probably a good idea to have lunch first, then movie. This happened because I walked the 1.25 miles to the theater instead of driving, and it is the reason that I won’t do cardio outside.
The other way is when things get bad and you feel like you are all alone in facing your particular burden. I am not talking about potentially lethal threats. I’m talking about the day-to-day burden or a new symptom or diagnosis, or a medication that just isn’t working that makes it seem that much worse. The truth is, you are alone in that burden, but if you take it apart and examine the pieces, there is always someone who has that same piece, or even a few of them. Or you could take a giant step back and look at the big picture (like when you look at Earth from space) and remind yourself that there is more that ties us together as patients than there is that separates us. We all feel sicker more often, stuck in a symptom loop, unheard, and like no one can relate.
Each of these forms of isolation can lead to a vicious circle or a downward spiral, each of which is difficult to break and may require help. Symptoms get worse and every minute that passes it gets harder to get out in front of it. You miss work or school. Chores go undone. Responsibilities go unmet. You tell yourself that if you could just take a few days and hit the reset button, you can get back to normal. But there is no reset button. Life is still happening while you are chasing your condition(s).
The deeper you get, the more “what’s the point” takes hold. Exhaustion and pain and vicious circles and downward spirals can get really dark really fast.
Support groups can help, or even just reading through posts in an online disease group. Talking it out with your doctor can help (that’s why they’re there). And if you are afraid of how people will view you if they really see the struggle, you don’t have to expose all your vulnerabilities to get help. It’s as simple as, “I’m struggling. I don’t want to get into it right now, but would you check on me?” Most of us have people for whom we would do this -- for whom we have done this. Why not let them do it for us? I have friends who get mad at me if they find out after, and I didn’t tell them. I bet you do, too.
But many patients, like many non-patients, find it difficult to ask for help, from strangers and loved ones alike. We feel like, if it’s our burden, we should be able to figure it out. And we usually do, eventually. But having a check or a resource and knowing it’s there can shorten the torture. I don’t know about you, but I am fairly sure I am not a masochist. If it’s as simple (not easy) as reaching for a lifeline that is already there, why not give it a try?