How Invisible is Your Health Condition Allowed to Be?
Dealing with a new diagnosis in the family and deciding how or who to tell.
When diagnosed with Type 1 Diabetes at the age of twelve, I wanted to hide it from others.
Through teenage years, young adulthood, dating and marriage, job interviews, employment, travel, pregnancy and motherhood, I have orchestrated a life where my serious chronic life condition does not noticeably affect my ‘normal’ living.
My health condition would become an invisible part of my identity.
‘You can let [it] control you or you can control [it],’ my pediatric doctor of the time Dr Sanderson had said, ‘What will you choose?’
She made it sound so easy. Like the decisions would be all mine.
‘I will control it,’ I had said; “It” being the operative word.
It became nameless. A facet of my identity I did not flaunt.
At the time, my mother had shrugged at the doctor and then me, aware already of the irony. Invisible diseases are uncontrollable, she would have been thinking, and would have known not to say voice that certain choices would never really be mine to make.
I chose to cast a shadow over my newly diagnosed chronic disease. Appearance-wise, no one need ever know, I had thought.
Yet, in my teens, often without warning, when (not if) my blood sugar dropped too far, I continued to suffer hypoglycemia. I would be incapacitated and need sugar. Quickly. Worst case scenario was the need for administration of the emergency Glucagon to stave off the hypoglycemic coma.
Conspicuous monitoring was needed. In many scenarios, the fact I had the disease was painstakingly obvious.
Nothing invisible about that.
So what are invisible diseases? And can those who have hidden ailments and medical needs choose to conceal often self-monitored medical care from others? We’re talking about health conditions that cannot be seen by the naked eye, yet impact patients’ physical, mental or cognitive functioning. To name a few, arthritis, diabetes, Crohn’s disease, chronic fatigue syndrome, lupus, thyroid and heart illnesses, multiple sclerosis, epilepsy, IBS, ADHD, asthma, endometriosis, migraine, autism, even cancer can be classified as potentially invisible.
The list is long. And many diseases, shall we say conditions, or do we prefer calling them illnesses, have hidden themselves from my inventory.
My Invisible Illness
Thirty-two years on and still juggling my own rights, needs, and alterations to my medical identity, my child is embarking on a life with similar ‘invisible’ life restrictions. Will the journey and the decisions be the same?
These days, there is a social trend for shouting out and sharing one’s medical adversity. It’s good to talk, right? I would argue telling of one’s medical emergency needs is okay, but chattering and gossiping to draw attention to one’s health might well be problematic if you’re thinking of the longevity and sustained relationship you will need to have with your chronic condition.
All adults of certain generations who have ‘invisible’ medical conditions will know that it is more comfortable for everyone to keep the condition and its health impacts on our bodies to ourselves. Often, we choose to deal with the medication and whatever episodes may come about through changes in temperature, environment, nutrition, stress, mental health etc. and so on, discreetly. Patients themselves will often strive to control episodes without fanfare. Less chance of repercussion.
Unless patients can’t control surroundings, environment or other factors.
Then there may be a problem. The danger of keeping things to yourself can become a personal risk. To use my own Type 1 diabetes case as an example, for safety, people who I am around regularly ought to know how to help in emergency cases. As much as I dislike it, my symptoms and administration of medication may remain invisible, but the potential for personal crisis is something that should be relayed to those who spend prolonged time with me.
Even so, I tell myself I’m not letting the diabetes control me. I embrace any form of invisibility. I’m the patient but also an adult.
But what if the patient is a child? What if the decision as to how invisible a health condition is needs to be made by a parent?
…
Imagine a scenario, a little like the one so cogently described by Mary Laura Philpott in her opening essay of Bomb Shelter: Love, Time and Other Explosives, the one where she and her husband are launched into a terrifying experience of watching their child go through an incident requiring ER attention and hospital admittance. An unexplained and unprovoked episode that commands high medical practitioner attention and leads eventually to a diagnosis, long-term maintenance medication and prescribed emergency medicine.
As parents, do we hide from sharing confidential medical details with fellow parents, teachers, childcare practitioners who meet and mix with our child daily? Other adults act in loco parentis, in our place and thus they need to know, right? When your child is young and in your full care, you wouldn’t dream of holding back significant important information about your child’s health.
Yet, there is a hazy blur that falls when we consider teenagers who are diagnosed with diseases and illnesses at a time when their developing identity is vulnerable. Stereotypically, young adults do not want every person in their vicinity to know of the medicine they need to take to keep them safe, let alone the thought of someone else administering medicine in a potential emergency.
For young adults “with invisible or concealable illnesses, the decision to disclose is [known to be] a contentious and intentional one.” (Woodgate RL, Tennent P, Barriage S, Legras N. 2022) Of course, patient confidentiality exists to protect patients. However when there are potentially dangerous circumstances for individuals, whose responsibility is it to reveal or conceal a patient’s symptoms, condition and consequently medication needs? It’s a choice, but sensible adults would know of the need to tell others, when important.
Today, as a sensible mother, I must re-think the invisibility of health conditions for my children. Apparently at school, it’s called a ‘Need-to-know’ status, which makes me feel better about the choice we’ve made in disclosing medication and illness details about my child. If people need to know … for safety … for care … in emergency, they can be told.
Otherwise, my child’s medical identity can remain invisible.
So, as a seasoned ‘hide don’t seek’ patient myself, here’s my take on the issue. In most situations, I keep my auto-immune disease of Type 1 diabetes secret. This may seem ironic since here I am discussing it and presenting it as a definite part of my identity. However, this is me embracing exposure of my condition as a tool to encourage open but sensible communication about emergency needs people may have.
I’ve been an 11-year-old pre-teen, an embarrassed teenager, a young adult in denial of disease, a student and then employee wary of judgement, as well as a proud school leader and determined mother. In every role, I have been adamant of my healthy ability to live and thrive with a condition about which not everyone needs to know.
The ‘need-to-know’ scenario feels right to me, both as a patient, and a mother.
In contrast, the trend of making medicine needs cool does not always sit right. I see the showing off of medicine needed to survive as a little problematic. Not in all cases, but I think it draws away from the serious nature of living with chronic illness; glorifies the complications requiring constant thought and full-time attention. Nevertheless, if someone happens to notice my insulin pump, my blood testing, my CGM patch or even simply that I’m carbohydrate counting before launching into a meal, I will talk about it briefly and put people straight as to what emergency care I may need. I know this to be very important.
As an advocate for raising awareness of Type 1 Diabetes, I follow several Diabetes organisations, as well as diabetics like me, and parents of children with diabetes.
I also follow more confident and often younger influencers who have taken the brave decision to show off their insulin devices and regular patch changes, meal counting and even their mood changes linked with the condition.
· @type1diabeteswarriorr , a community dealing with Type 1 Diabetes, with the aim of increasing global awareness of Type 1 Diabetes.
· @beyondtype1 ,a global NPO, changing what it means to live with diabetes.
· @thriving.diabetic , T1D author of books and journals but also proud to be sharing her life with T1D.
· @type1amy , all about inspiring health, wellness and diabetes positivity.
· @mydiabuddies , a non-profit, health and wellness website running a community app for diabuddies. Set up by @type1amy
· @savedbyajuicebox , a teen with T1D, but also a track and field athlete, happy to be sharing her life with type 1.
· @doubletheinsulin
· @emoneyt1d , who has a personal blog and a humorous take on the calamities of living with daily diabetes challenges.
· @julie.calidonio , a writer, lawyer and mother, but also T1D advocate for her son. I love all that she has done to raise awareness and boost positivity around the condition with her son, but also all families in the world who have genetic links to T1D.
In my current circumstance, as a mother and carer with new responsibilities regarding administration of medicine and emergency support, I have decided to sweep away the invisibility cloak from myself and in time of my [ … ] child. Our recent shock and altered medical requirements and regimes for our child has led me to speak out about what needs to be considered when conveying to others our potential medical emergencies, whether they be mental, physical or both.
I seek a happy medium, one where we can confidently inform others of what may need to be done in an emergency, but then let it meld into our identities, no longer a stark fluorescent beacon to draw attention or expose us.
Woodgate RL, Tennent P, Barriage S, Legras N. The centrality of disclosure decisions to the illness experience for youth with chronic conditions: A qualitative study. J Health Psychol. 2022 Mar;27(3):521–533. doi: 10.1177/1359105320962242. Epub 2020 Sep 28. PMID: 32985894; PMCID: PMC8832564.
