Why I Find It Difficult to Open Up About My Chronic Health Issues
Opening up to people about my health is something I struggle with, yet since I am living without my family or any flatmates for the first time, it is increasingly important that I do exactly this. My recent attempts to inform people around me about my health made me realize that something so normal and personal to me is very difficult to convey to people who haven’t experienced such things. The conversations I have in trying to bridge this gap are often very daunting and testing for me.
Firstly, it is extremely difficult to find the right words. I am doing a biomedical degree, yet even my course-mates fail to comprehend the severity of the things I explain to them (or the terms used to describe certain events and symptoms) despite their scientific knowledge. Trying to explain my health to people who don’t have such scientific knowledge is even more of a challenge, as there is so much complexity behind something that on the surface seems so simple. It is very easy to tell someone the name of a condition, but a name is just a name, and often they have no idea what lies behind it. I don’t want to patronize them by using overly simple language, and I don’t want to baffle them by using medical jargon that they don’t understand.
Then there’s the difficulty with striking a balance in regard to how much to disclose. My health issues often make me feel alien, and I frequently withhold information to prevent people from viewing or treating me differently, or asking me if I’m OK or am safe to be doing things every five minutes. I have childhood friends who still have no idea that I have any health problems at all! I don’t want to scare people off and worry them by going into too much detail, but I also need them to be aware that I am likely to at some point become seriously unwell in their presence, which means that while not alarming them, I need them to know that these situations need urgent medical attention, and I like to feel sure they are confident in what to do should such an event arise. But how much is enough to inform them, and how much is too much?
The other problem with opening up to people about my health issues is that I cannot control how they react. People have a tendency to overreact and treat me like a baby, or completely dismiss what I’ve said to them and act as if it is a case of “mind over matter.” Both of these reactions result in my embarrassment, and make me squirm within my own skin, suddenly ashamed to have mentioned my health at all. I’ve been bullied because of my health issues, and lost too many friends to count through lengthy hospital admissions. I want people to understand the severity of the situation, but at the same time I don’t want them to worry all the time or avoid my company — if I hadn’t told them about my health they would never have known, and I know if given time to live alongside my health issues, they will adjust to them as I have.
Unfortunately, the nature of having defects with internal organs or having an invisible illness means that people experiencing such health issues don’t look outwardly unwell. When I was younger, all I wanted was to blend in, and I was often relieved and reassured that as I got older I became better at hiding my injections, pump, and other things which set me apart, from those around me. As I have grown increasingly older, my self-consciousness about my injection and infusion sites (and scars) has intensified a little. However, my ability to hide any obvious markers of my health issues has proved to be both a good and a bad thing.
In terms of health, it seems that most things have to be seen in order to be believed, and becoming good at masking my differences means that I often hear the words “but you don’t look ill.” After explaining what is going on within my body, people sometimes look me up and down and seem shocked that I don’t have my health issues tattooed across my forehead (or something equally obvious). This makes me feel ashamed and embarrassed for mentioning my health at all, as I then feel that I have to justify the fact that I am unwell, yet don’t have the confidence to continue talking about my health.
People often like to try and relate what I tell them to a situation they can understand as they try to comprehend everything for themselves. This has resulted, on many occasions, in people telling me they understand exactly what I’m going through because they had a blood test once, or have a cold, or just had food poisoning. Sometimes people tell me that at least I’m not dying and shouldn’t make a fuss or tell people about my health (clearly not appreciating that what I have could kill me, or thinking that I’m being overdramatic) or fill their response with prejudices based upon stereotypes, misinformation or misunderstanding.
I know there is no perfect response, but sometimes I wonder if that’s just because there is no perfect way to make people see that beneath my smile and my clothes, there are both physical and emotional scars and issues that have been left by years of health problems and hospital stays. People have no idea how difficult it is for me to tell them about my health issues… and get it right.