I have a hereditary connective tissue disorder that affects all areas of my physical health. And I have a full, happy and rewarding marriage, family life and professional life. Often, people who know my health struggles ask me how I do it, or how we do it.
To answer this question, I have to tell you my story – our story.
Chronicling the weird things my body did
I’ve never enjoyed “normal” health because my body has never worked the way “normal” bodies do. I’ve been known to faint randomly in the most inconvenient places, to dislocate my hip while getting on my bike and to dislocate my shoulder multiple times at night while sleeping. My retina, I’ve been told is so damaged that I have deficits in my peripheral vision that would make driving a very bad idea.
But to the untrained eye, I look fairly “normal” most of the time. I’m one of the millions of people with an invisible illness that wasn’t diagnosed until later in life. Before that, doctors considered me a medical mystery, while friends sometimes awkwardly asked me questions about weird things my body did, and the rest of the world didn’t notice anything out of the ordinary.
My labs were never “normal” enough for anyone to tell me my health issues were all in my head, and until age 40 when I was finally diagnosed, I kept hearing some variation on the theme of “we know there’s something physically wrong with you, but we can’t figure out exactly what it is.”
The misdiagnoses and collection of tangential diagnoses that just kept piling up, seemingly disconnected from each other and eerily somehow disconnected from me.
Meeting the knight in shining armour
My husband, Marco, and I met when we were both PhD students at U.C. Berkeley.
When he first came over to my house, I was recovering from an injury. He brought me some soup and what he could do to help. He offered to do the laundry and some dusting. A few days later, he took me to a medical appointment.
We were running late, and there was no time for hobbling about on crutches. He carried me and started running, and got me there on time. A few months later, I fainted in the passenger’s seat while he was driving. I wasn’t diagnosed at the time and only got my diagnosis several years later.
For the first few years, there was always this shared idea that someday I would find out what was wrong with me and then I would fix it.
When I finally got diagnosed, the reality set in. I won’t recover.
You, me and the illness – an unlikely threesome
I may have better and worse days, but the illness will always be with me. In pictures of the two of us, we are always at least three. My illness is invisible yet ever-present. It wasn’t easy for my husband to adjust to this reality and to let go of the expectation that I could heal and be “normal” if we just found the right doctor, the right clinic, the right diet, the right something.
Letting go of the expectation for healing in the presence of a chronic illness doesn’t mean giving up hope.
In my case, it left room for me to get better, because the expectation, at last, wasn’t the impossible expectation of getting “well” or becoming “normal” – my normal and my wellness are different from the norm.
I can give a talk on nutrition in front of hundreds of people and talk through a spontaneous shoulder dislocation, answer questions with a smiling face and get invited back as a speaker. I can faint suddenly while bringing scraps to the chickens in the morning and wake up in a pool of blood on top of the broken plate, pick out the shards from my wounds, hobble into the house to clean up, and go on to have a reasonably productive and happy day.
Counting the blessings
My health condition would make it hard for me to commute to an office for a structured job in a “normal” workplace. I feel so fortunate to have the education, training and experience to work in a more creative and less structured way, which allows me to make a living doing rewarding and stimulating work.
I’m a full-time nutritional therapist and work via video calls with clients all over the world, preparing individualized nutrition and lifestyle plans for people with chronic and complex health conditions. My pain level goes up and down, and injuries and setbacks can occur in unpredictable moments.
Imagine living in a nice home, except that there’s always unpleasant music playing. Sometimes it’s really loud and sometimes it’s quieter, but it never really goes away, and you know it never fully will. You learn to manage it, or you go crazy.
I am so incredibly grateful to be loved and to love.
I am grateful to Marco for loving me as I am, for doing the hard work of accepting the unpredictable surprises, the ups and downs, of watching my suffering without always being able to change it. Admiring me and being proud of me for what I do every day.
Loving the spouse in sickness and in health
So many couples even loosely following the traditional wedding ceremony promise to love their spouse “in sickness and in health” – but often, we underestimate what this means in the case of lifelong chronic illness, or of a grave illness that comes on suddenly, such as a diagnosis of cancer or a serious accident.
We, Westerners, live in a society where illness, in general, is rampant, accidents are common, and cancer is more prevalent than any of us would like.
But talking about illness, pain and death is taboo in many ways.
Well-meaning spouses may say the wrong thing or may run away for fear of saying the wrong thing. What right words can there be to talk about something so hard?
I hope we can all step up our game and be brave enough to hold space for each other in our suffering, to have the strength just to be there and express our vulnerability. if only by saying “I don’t know what to say” when there are no words while holding space with love and authenticity.
As hard as it is to hold that space, it’s important to remember that it is filled with love, and shines with the light that only love can give.
This luminous light is a healing light. Not in the miraculous sense of instantly taking away illness and suffering, but in the deeper and more real sense of giving us the strength and hope to keep living, working, loving and smiling in our imperfect bodies in this imperfect world.
I deeply believe that it is only in acknowledging and loving the imperfections of our bodies and of the world that we can truly understand the beauty of life and give and receive love.