When it comes to longstanding medical conditions that aren’t common knowledge, it can be a real pain to make yourself understood. Sometimes it’s tempting to liken your condition to one that is more well-known but I’ve found that sometimes it can do more harm than good.
“I have rosacea, it’s like eczema but with less flakes.”
My skin condition isn’t that unusual but it can still be annoying to have to explain to people. Like many suffers of skin conditions I constantly feel as thought I have to defend myself against the label of “spotty”, “acne” and even just “grotty” when it comes to my irritated and reddened skin. Describing it as being like eczema, which most people have encountered, means that I can at least immediately gain recognition for my skin disorder. The problem is that rosacea and eczema are alike in relatively few ways other than both being skin conditions. The slew of eczema advice, though well intentioned, is useless to me. Rosacea reacts to sunlight and many creams in the opposite way that eczema does. And I have no one to blame for this tirade but myself for seeking the quick and imprecise way to explain my condition.
“I have Tietze syndrome, it’s like asthma only with pain.”
Whilst rosacea isn’t that unusual (there are often sections dedicated to it on health websites) tietze syndrome is virtually unknown. I suspect that the only reason I was eventually diagnosed is because my Dr also had it. Caused by an inflammation of the cartilage in my chest, there are two obvious symptoms that people notice: shortness of breath and pain. When I first started to develop symptoms many people wondered if it was asthma simply because I was 14 and difficulty breathing almost immediately brings that condition to mind. Asthma is defined as a condition that makes it difficult for suffers to breath. But I could take air into my lungs just fine, it was only that it hurt so badly to do so that it made me sick.
A dangerous element of comparing these two conditions would obviously be that the treatments are totally different. When pain strikes I need to take strong pain medication, leaving me able to breath again comfortably. Misleading someone into looking for an inhaler when I can’t tell them I need something else puts us both in a terrible position.
Truth be told, my condition is often compared to a heart attack in articles I read. There is no way to say that to someone without them panicking even more but I can see the similarities. The chest pain is very pronounced but a key factor with my condition is that none of my internal organs are involved. There is no problem with my lungs and no problem with my heart, it’s only my rib cage itself, which is malfunctioning.
“I have bi polar disorder, it’s like depression but I can be really happy as well”
My final long-standing condition is bi polar disorder. This can also be difficult when comparing to depression and it is compounded by the fact that some people still know it as “manic depression.” In reality, there are a whole host of differences between the two conditions, a key factor being the way symptoms arise. As a bi polar person I can go through days, even weeks as a perfectly average person. This is an unknown world for someone with depression, where every day is a struggle to even attempt something approaching normality. When I have a low swing or an upswing (as I like to call them) my brain chemistry will jam into one of the emotional extremes. I will either become hysterically joyous or aggressively depressed. Often this will have been triggered by a smaller event that would normally bring about a usual emotional response. My condition means that sometimes this reaction gets ramped up to ridiculous extremes and I’m along for the ride.
Because I’m also classed as a high functioning bi polar sufferer it also means that people can question if there’s anything wrong with me at all. Just like with my tietze syndrome, people can be more sceptical when you’re forced to tell them that something might happen due to the unpredictable nature of your condition. It’s only when they see it in action that they have something to work from. But in my experience, it’s worth telling the whole story no matter how boring and repetitive it gets. Not only because it’s a better way of protecting your health and, by extension, you. It also shows the person you’re talking to that you respect them enough to take the time to explain, so they don’t feel so powerless if something does go wrong.
Kayleigh Herbertson
Kayleigh is a 20 something year old woman who is currently living with a chronic pain condition, a skin condition and a mental health condition. Juggling these three can be something of a challenge but she's always ready to take things on head first!
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