A few weeks ago, Fred asked me, ‘How easy is it to be your friend?’ I laughed and told him, ‘You tell me.’
Being a friend to someone living with #Lupus has got to be the most frustrating situation ever. You have to expect canceled plans because of sudden illness. You have to expect sudden illness when you are up and about probably having fun. You have to know what your friend suffers from, what meds they take, how to react if they get I’ll suddenly. You are not just a partner for fun times, you are a support system and sometimes a care giver. That is such a burden to carry!
A few years ago, I was part of a merry band that I considered my friends. When Lupus reared its head, I went through the usual motions of a Lupus flare. You wish it away. You feel guilt and shame. You try to push through it. And then you fail and collapse. Then you get up and try again. I struggled to stay afloat. Sadly, my merry band did not have the capacity to comprehend what had assailed me.
We went through fights because of canceled appointments, to accusations of being a hypochondriac, lazy, suffering from Münchhausen by Google, and so on. When I am in pain I am not the best communicator. I either shut down or explode in acidic words. That didn’t help much. So in the end, I lost my merry band of not so real friends. Or rather, I cut them off to end the reign of negative energy.
Fast forward 3/4 years and I’ve had the beautiful chance to experience the exact opposite of that situation.
Loving someone who lives with Lupus means that you empathise with their pain, you worry about their prognosis, you become as much of a warrior as they are.
In the last few months, I’ve watched my friends quietly organise and reorganise plans so that I am not exposed to direct sunlight, so I don’t have to walk too far, so I have water, meals on time so I can take my meds on time too. They understand why I am safer with companion in the event I have a seizure, why getting into a matatu is about as dangerous to me as coming into contact with vials of live viruses for a person with a healthy immune system. These little complications and inconveniences…
The truest of my friends know that in itself Lupus is part of my identity now, and that the illness doesn’t make me less of a person, only more; more ambitious, more determined, more resilient, more hopeful…
Living with Lupus has made me accept one fact. There are not very many people who are willing to take on the role of friend to a person living with Lupus. It is a tough job. It is an incredibly tough job. I would not fault anyone for choosing to walk away.
And I am so incredibly in awe of those who choose to stay.