themighty logo

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 ‚Äúmind¬†over matter.‚ÄĚ 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 ‚ÄĒ 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 ‚Äúbut¬†you don’t look ill.‚Ä̬†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‚Ķ and get it¬†right.