How I've Found Allies for My Daughter's Rare Illness


Lately, I have been thinking about how to transform healthcare advocacy into an act of love, and as an invitation to meet allies.

“Advocate” – a person who pleads for or in behalf of another.

Both my kids have rare diseases; both situations require radical acts of love and advocacy.

My youngest has a genetic disorder that results in periodic flare-ups and unremitting symptoms that range from Crohn’s-like ulcers in her mouth and belly to swollen, aching joints, high fevers, fatigue, wasting, uveitis, swollen lymph nodes, to merciless pain.

Her illness is capricious in its when’s, how’s, and why’s and can hold our entire
family captive to the swathe it cuts across childhood.

And yet, we all choose hope and we find allies in each day. We find allies in each new specialty care clinic, each new lab, each new intake area. We take the chance to look for love and allies.

I realized early on in advocating for a child with rare disease, (which happens to affect less than one in a million) that I would be writing my own “how-to”
book. There was no “what to expect” book, with those guideposts that served me
well in the era before the illness took root. There was no chapter for managing uncontrollable pain, holidays missed to sky-high fevers and illness, movies unwatched because of ocular issues, and regular ER trips for the flares that come out of nowhere.

I have all kinds of tricks now. I know how to find clinical trials, doctors publishing in the arcane corner of the medical world relevant to her illness, other families living with similar illnesses, and complementary and integrative approaches to care. When insurance says “no,” it’s merely the beginning. I can talk about L1 receptors, cytokines, and cellular level inflammatory processes. I can find the needle in the haystack when it comes to providers or researchers who may help my daughter. I don’t flinch in the face of the regular fevers that won’t respond to analgesics and go from normal to over 105-degrees in minutes. I just get the prednisone and ready ourselves for the ED.

I am tenacious by nature and a fierce believer in justice. Even prior to my own child’s illness I had dedicated my career to advocating for increased access to medical care for low-income communities. A career that I engage in with love. For in every health disparity, there is an opportunity to form an alliance, to right a wrong, to make the path to wellness more available.

Even so, I was not ready for what lay before me. The mountains to be climbed to get medical accommodations at the school, the relentlessness of rejections by health insurance for necessary medications and testing, the time required to coordinate more than a dozen doctors working out of three medical centers, the psychologists and therapists who need regular medical updates, and the real difficulty in effectively managing pediatric pain. It has been an exhausting, illuminating, and humbling lifestyle to assume.

If we don’t look for magic we won’t find it.

I think it’s the same with allies when we advocate. I realized all to often “advocate” becomes “adversary” in this damaged system of healthcare.

I seek providers who will serve as allies and champions, and there have been so many. I learned early on to build the team out of providers who share moments of gratitude as well as expertise – and who put my child at the center of care. These are providers who listen to this small person, because she is the ultimate expert on her own body. And when they fail to listen — when they fail to respect she is the expert in her own experience of illness — they fail to be her ally and they fail to be her advocate. When they fail to serve as an ally in healing, I quietly dismiss them from her team of caregivers. There is room for respectful differences of opinions, but there is no room for an adversary on the team.

This team of caregivers are there to care for this small expert by honoring her experience of an illness that steals a portion of her childhood.

Advocates work on behalf of others and allies formally cooperate with one another. I
don’t expect cures or answers at this point; it’s not that kind of an illness.

But I do expect, and am glad to have found allies in healing.

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