I find it increasingly challenging to be part of the healthy world as my illness grinds on. After all, who wants to hear about the various insane things my body is doing at any given moment? Heck, I don’t even want to think about my illness, let alone talk about it. On some level, I need the people in my life to acknowledge my condition – myalgic encephalomyelitis (ME/CFS) – before I can put it aside and focus on other aspects of life.
The weekly Zoom calls with my husband’s family offer a microcosm of this dynamic. Each week we dutifully get online, mostly for the benefit of my wonderful 91-year-old mother-in-law – a very worthy cause, especially given that we have not been able to see her during the pandemic.
Inevitably, we do a round-robin of “How was your week?” I hate that question – what am I supposed to say? That one night, I could barely crawl to the toilet on my bare knees across a cold tile floor? And that I fainted into a crumpled pile of cold sweat when I attempted to stand and return to bed? Do I tell them that my blood pressure was 66/33 when I woke up the other morning? That I can’t sit upright for more than a minute before I start feeling dizzy, nauseous, and dreadful? That various symptoms point to a sinister culprit lurking in my spine and brainstem? That I am terrified about new markers showing up more regularly in my blood work? That I am working diligently to bring a friend with very severe ME back from the brink?
Instead, I say, “Not much this week! Just helping my son with homeschooling!”
At the outset of my disease, I made a point to keep showing up and trying to participate when and how I could. I carry the false belief that as long as I can hold up the appearance of being a pleasant and productive person, I have value. Is there a point beyond which a sick person has little value to healthy people? Where is that line? Much of the time, I can keep my nose just above the 30% function level, but occasionally, like right now, my function has dipped lower again. When I struggle to cope, anger and frustration spill out. I wonder about ordering a biohazard sign to hang around my neck to warn people.
Awareness of old roles
My therapist is a big fan of exploring “old roles” – the coping mechanisms that we put into place as children. Much of the time, these old roles no longer serve us in the way they did when we cleverly came up with these strategies as a child.
A recurring old role that shapes me is what I call the “fine, I can do it by myself anyway” old role – it’s a survival role borne out of being somewhat neglected as a child in a household with two family members who took up most of the oxygen. My reaction was to make myself as small as possible by tending to all of my own needs. I have carried this strategy into my illness. Rugged independence and ME/CFS are not a great combo.
Many of us feel so alone in our illness, despite being embedded in a family. In these situations, the medical aspects of our life get compartmentalized, and we deal with them on our own. Until we cannot.
I wish the loved ones in my life could anticipate my needs a little more. I feel ridiculous saying that because it amounts to asking someone to read my mind, which is not fair. It is hard to ask for things as a fiercely independent person, so I don’t. It also takes energy to take on the responsibility of communication. Sometimes it is easier to push through and do what needs to be done on my own – but that is on me. I also can try to learn more about what my loved ones need to feel seen and heard.
Vulnerability is a two-way street
Chronically ill people need more than material support. We need emotional support. I don’t need to recite a litany of symptoms, but rather I would like to have more discussions about my thoughts and feelings on where I am at in my life, which is shaped heavily by my illness. If someone were to ask me this, I would say that I am terrified. Terrified of losing more function, terrified at what is driving the latest decline. Terrified for my severely ill friends. Terrified that I will be in a family that increasingly struggles to tolerate me. Terrified of my behavior when my coping ability has eroded to that of a flea.
I am not so good at being vulnerable even within my chronic illness community. I want to be a force of goodness and support, but this gives the impression that I am a lot stronger than I am. I am fortunate to have a few friends – healthy and chronically ill – who allow me to be vulnerable and hold my vulnerability with exquisite care. They catch me when I fall and make me feel safe.
Having this rapport with the small group of friends allows us to move past chronic illness and spend our time talking about things that have nothing to do with being sick – we talk about the nuances of recipes, dig into the nitty-gritty of a new scientific paper, share the latest antics of our families and pets, ogle over our jigsaw puzzle exploits, explore dreams, laugh about absurdities, discuss politics, moan about the pandemic and, in general, laugh a lot. I am so grateful I have people I can easily be around. People who embrace me for my big, messy self.
Once we dispense with the elephant in the room, I am happy to not focus on my illness. But how to this get to this place with healthy(ish) family and friends? I think I know the answer. I have fallen into a pattern of talking with friends and family members only about their lives, while not sharing mine (if not asked, I tend to not share). I can spend an hour on the phone with someone and never touch on my life and how I am coping – physically and emotionally. The problem is I can’t really talk about my life without some acknowledgment of my limitations. I can’t play normal anymore. This need not involve the gory details but rather an acknowledgment that I am sick and have additional struggles.
To my friends who have been silenced by having a very severe form of this disease: I see the person who is trapped inside of you, even if you cannot communicate. I see you for who you are, not as your illness. I hold your dreams with you.
I can’t shake the following thought: what if people may harbor doubts about my illness and ME/CFS in general? After all, I constantly go beyond my energy envelope until I crash (which people don’t see), giving the appearance that I am more capable than I am. Society and medicine continue to bake in lingering doubts about my illness’s validity, requiring a vigilance that is so exhausting.
Many disabled people need to feel belonging beyond our usual echo chambers. How to bridge this divide between the “healthies” and those experiencing a chronic illness? How can we stay relevant and be celebrated in our own right?
To all of those who feel left behind by the healthy world, I see you and care about you just as you are.
P.S. I come at this from the perspective that everyone has their struggles. I don’t mean to make “healthy” people out to be a monolithic group. Rather, this is more about finding ways in which healthy(ish) and chronically ill people can be more vulnerable together and, in doing so, can support each other better. I own my part in this.