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.
Frozen in Amber 
Caroline, thanks for sharing your thoughts. My son (26) and daughter (30) are recovering ME/CFS sufferers who were at the peak of their disabilities in their teenage years when, it seems confounded by raging hormones, they struggled to express their thoughts to their parents, and all we could do was be there for them. So it’s helpful to read an insider’s perspective when the communication is not filtered by confounding boundaries of a parent/child relationship. Your illness seems to be such a blight for high achievers – mine were gifted children, now gifted adults, who still can relapse if they overdo things. Thankfully, they have learned that they don’t have to always excel and there are times when they are better to withdraw. And yes, I think more than most people realize, many many of us have our own “unwellnesses” to grapple with, which can often be a solo journey, but happily in this digital era, experiences can so easily be shared with fellow travelers. I wish you the very best in your struggles and look forward to reading your next blog.
Regards Simon Woodward
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You have such grace, my friend. This essay will bring the comfort of recognition to so many. I think of the dozens of times I started to write something similar but didn’t finish because of the same questions of audience. Yes, we need validation, and then we can shift to other subjects because that trust has been established. Well, it may be rare for us to find that trust or to be able to keep it with others as our condition lingers and the years go on, but I’m so thankful for those that remain, or that are newly found, so often because we share the condition. Like you.
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My dear, dear Carollynn, thank you for reading my blog. You featured front and center when I wrote this piece. Finding another soul who has a rich inner world and is filled with compassion helped me to transition into my life with a disability.
You touch on another piece to this – trust. For me vulnerability is based on trust. Chronic illness takes it to the next level- sometimes our wellbeing hinges on the trust we place in others.
I cannot imagine walking (wheelchairing?) this path without you and my other beautiful friends I have met since joining the ranks of the chronically ill. Love you so much, my friend.
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Dearest Caroline,
I’m so sorry you are in a very severe phase of ME. I so wish you start to feel better soon. You describe childhood strategies that I have utilized as well. In my family, numbers 1 and 2 took up all the oxygen in the room. #1 was just a bad boy. My sister (#2) was severely autistic and having grand mal seizures every day that the docs didn’t even try to get under control in the late 50’s. As a result, #’s 3 and 4, my sister and I were very well-behaved and tried not to be needy as we were followed by a miscarriage, then another boy. My parents were wonderful, but I know I took it upon myself to be the least needy I could be. I remember being mortified at being sick or injured. Thank you for validating that experience.
One of hardest parts of this illness is how invisible it is to many, including the medical establishment. Even at the ER at Stanford, I find myself being defensive when the docs seem to know almost nothing about ME/CFS and I am presenting with autoimmune issues. (Uveitis and Scleritis this past time.) Before the opthamologist made the diagnosis, the head ER doc came in and said, “You probably just touched your eye and got something in it. The good news is you’ll be fine.” Well, actually uveitis commonly leads to blindness. It feels like the world is successfully gaslighting us. The experience of this illness tests my self-esteem over and over again.
Although my Fran is the kindest, most loving partner a person could ask for, I still feel guilty and have many times dreamt that she would leave me because of my lack of productivity. When I wake up, I am so relieved, because I feel there isn’t a shred of truth to my fear. But obviously I still harbor the fear subconsciously. In my darkest times during covid, I have thought that it would be better if I die because I am not productive enough, not deserving of the care I need. I’m not bed bound, and never have been, but I’m a lot of trouble. 😉 My tissues seem to be breaking down now and my diagnoses seem to be compounding. I can never predict how I will feel, so making commitments is very difficult. I have to remind myself in my dark times that although my body doesn’t bounce back, my spirit does.
I want you to know that you have been such a bright and warm presence in our ME/CFS support group, both helpful with medical advice and emotional support to many people, including me directly. I would love to be such a support, but don’t have enough medical knowledge, and not enough energy to consistently be there emotionally for people. So I admire your ability to be that presence. Know that you are appreciated and loved and that you also get to take the time you need to take care of yourself, rest and do the things that make you happy.
Best wishes!
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My dear Barbara, I am so touched by all you wrote above. Thank you for sharing your experiences from childhood – you helped to fill out my experience as well. As a child, my actions were largely driven by being the “good girl.” As you say, with strife in the house, I didn’t want to add any more. In doing so, I made myself so small. I am sorry that you had a similar experience. As I mentioned in my piece – this acquired trait of fierce independence does not mesh well with chronic illness.
Your experience at the Stanford ER is so horrible and sadly one that so many have faced. I have concluded that I will leave ME/CFS out of the picture while seeking help from new doctors. What is ME/CFS but a collection of co-morbidities? How horrible that we even have to think this way – that we have to hide a devastating illness simply to get help. As you know, being disbelieved can have grave consequences.
The lack of recognition by medicine requires so much additional vigilance, as you so eloquently pointed out above. This zaps even more energy.
Your Fran sounds like a beautiful human. To be seen for who you are inside despite the toll that chronic illness takes is the greatest gift of all. I often think about all of the beautiful people trapped inside an ill body and unable to share their brilliance. Look at Whitney – after so many years of silence, we come to learn that the same beautiful man was there all along. I think about how the world would be such a better place if our voices could truly be heard – so many creative, smart, talented, and soulful people who have been hobbled by ME/CFS.
Sometimes fear causes me to get ahead of myself. I wish I sometimes knew where this illness is taking me, but then I remember that we cannot predict the future. The problem is residing fully in the present is challenging due to the crazy things our bodies are doing. Still, there is much to be found in that space.
Thank you for your kind words – I love our community to the moon and back. Know that you are loved and valued just as you are.
Caroline
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Dear Caroline, thank you so much for yet another honest and insightful blog that is also difficult to read because you are so right. The struggle to be seen in this ‘invisible’ illness must be so hard – I get it and have noticed as a caregiver how most people do not want to inquire and really understand what my daughter is going through. Chatting about mundane meaningless things even among family is hard. This isolation, especially in this pandemic, has been so tough and it has become worse. And the fear to get even sicker because of Covid. I am so sorry that things have become even more difficult for you. Keep talking, if you can, about your needs, your fears, your feelings, and hopes and dreams. It does not feel right that you or others who suffer from ME/CFS should be the ones initiating these conversations and bridges to the ‘healthies.’ All the best and much love!
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My dear Misha – Thank you so much for your messages – I am so grateful to have you in my life. I have so few people now who knew me when I was charging around, still working, serving on boards, doing African dance (well, I clearly had no groove, but loved being there with you!). Your desire to understand and to sit with those of us who are unwell is a balm to the heart.
Your messages helped me realize another side to this – one that is worthy of its own piece: the isolation that caregivers of people with ME face, especially when caring for a child. So much of being a parent involves talking to others about your children and all of their accomplishments over time – graduations, careers, weddings, children, etc. I can imagine how difficult it is to be with friends who stop asking simply because they don’t know how to be or what to say. This only leaves to more isolation and puts the onus of the relationship on you because you have to carry more of it. You, as a caregiver, also need people who can help you process the lived experience of being a caregiver for a sick child.
I also think of how isolating it is for Hall as well – to arrive in a new town with no friends and a sick wife. I am guessing no one ever asks him about how he feels about his situation and how alone he must feel.
My heart is bursting for the two of you – when this darn pandemic is over, I would love another visit from you both. I have such fond memories of when you can and think of you every day when I drink my tea out of the dragonfly mug you gave me – it’s my favorite.
Sending love to you – xxx
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Thank you. I felt and identified with every word.
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Sending hugs – it is so hard when all you want to feel a meaningful connection with others. I often find it easier to show lots of interest in others’ lives – it is easier for me to ask them about all they have going on. Even though we live a life with many limitations, we still have a rich internal life – so many thoughts, ideas, and emotions to explore. While I would never expect someone to know the nitty-gritty of my medical details, I do wish that people showed more interest and curiosity in the lived experience of this disease. After all, there are many universal themes of love, loss, dreams, etc. xxx
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