February is recognised in several countries as “Heart Disease Awareness Month”. As this is a subject very close to my… (please forgive me) heart and given that this is the last day of the month, I felt I couldn’t let it pass by without sharing something.
Fortunately, I’ve had this post in the pipeline for a while and this seems like the perfect time to put it out.
So, what do I mean by what we wish people knew about having a heart condition?
Well, while there are obvious topics to cover, such as hospital visits, surgeries and the symphony of assorted sounds you can hear by putting a stethoscope to our chests, I want to focus more on the less well known parts of life that go hand in hand with these conditions.
I am part of a group set up by the British Heart Foundation and a couple of weeks ago I posed the question;
What, as young adults, would we like others to understand about living with a heart condition?
There were a number of interesting and varied responses, some of which I had never considered until they were brought to my attention.
The first thing to clarify is that this post isn’t being shared for the purpose of causing anyone to hang their head in shame for not noticing these things.
I am writing this to simply shed some light.
Please bear in mind that while most of the following points are true for many of us, they come from people with a range of different conditions and won’t always affect others in the same way, or even in any way at all.
1. “Being breathless isn’t the only symptom”.
The above statement goes straight to the heart of the matter.
Breathlessness is quite often the only obvious, outward sign that a person might be living with a heart problem.
It occurs when your heart just cannot deliver what is being asked of it.
That might be due to exercise, long days or even going up the stairs to the toilet. It is very dependant on the individual as well as the activity. For me personally, back in school I never really kept up with things like football, (though I wasn’t the worst in class) but when it came to kayaking, most people were in my wake.
However, there are so many other, less easily observed complications.
Associated water retention can cause drastic weight fluctuations. There can be dizzy spells and fatigue, along with myriad other things you might never think to associate with a heart condition. I personally have problems with my teeth due to medication I needed affecting the way they developed when I was very young. Trust me, I’m not even stroking the tip of the iceberg here when it comes to possible issues.
2. Not everyone with a condition knows they have one.
My condition was diagnosed at just a few weeks old and so is something of which I have been aware for many years.
That isn’t everyone’s experience, some people go way into their lives before finding out they have something going on with their ticker. One person who responded to my post spoke of “finding out at 17 after being very sporty which had masked my symptoms. It meant that it was hard to explain to people as I ‘looked well’”.
The impact of finding out something like this at an age where it feels like life is about to take off is massive. I may have known about my heart since childhood but I was this same age when I lost my leg and trust me, it does a number on you.
The difference however, is that anybody could clearly see I had a leg missing.
The line “I looked well” is a very important one. People can find it hard to grasp, after years of appearing healthy, that their friend, family member or colleague has a heart condition. In fact, it can go so far as to result in people not believing that it’s as bad as they say and accusing them of looking for an excuse to be lazy.
What they don’t and quite frankly can’t possibly understand is that it is far more difficult to grasp for the person who, after years of appearing healthy, has just been told they have a heart condition.
3. “It’s really important you know your own body.”
On the subject of finding out later in life that you have a heart condition, one person pointed out “it can be really frustrating being told you now cannot do things you could done before diagnosis”.
Doctors deal with a myriad of people and as much as they do their best to deal with everyone on an individual basis, sometimes they have to work with the statistics of what has gone before. This means telling us that there are certain things we shouldn’t do because of our conditions.
Now, I am not going to say that anyone should go against what medical professionals tell them but it is important for us to sit down with our doctors and discuss what we can do and what we should avoid completely. The answer quite often can be “if you continue to feel well and fit enough then that is great but if not, take a step back”.
Again, there will always be exceptions but it is important for people to understand that, just like people without any health issues, everyone has different limits. Even two people with the same condition can have vastly differently capabilities.
There have been times I’ve heard someone say “oh he can’t do that, he’s got a heart condition” and I’ll be standing there like “excuse me young sir, I think you’ll find I can’t do that because I have one leg, the heart has nothing to do with it”.
4. The prospect of having children.
There are two points to this topic, neither one of which I feel I can talk too much about as they don’t come in to play for me personally.
However, I will share what has been sent to me, along with what little I understand of this very sensitive subject..
“You may not be able to have children, I think some people don’t realise that it’s not about fertility but about whether your body can withstand the stress of carrying a baby.”
This is the case for some women who have certain heart conditions. The strain that pregnancy puts on their bodies can sometimes be too great for their hearts to handle, meaning the risk that comes with having a baby can be very high.
There is also the worry that certain conditions may have a chance of being passed on to the next generation. This is a huge consideration for anyone planning to have children.
5. Nobody can look “too young” or “too healthy” to be disabled.
This one really grinds my gears.
Not for myself either because, as ridiculous as it is to say, when it comes to using disabled services (toilets, bus seats, lifts etc.), I am fortunate in having one leg and a penchant for wearing shorts whatever the weather, so nobody can throw the above line at me.
Heart conditions can be ornery and unpredictable beasts and what makes them so are the fluctuations in how they effect people. One day somebody can be bright and full of life but then, as one of the comments on my post said, “on our bad days the smallest of tasks are exhausting”.
One of my respondents commented that this is not about seeking “pity”, just “wanting some consideration and understanding”. I feel that this, among many of the things I’ve mentioned in this post, transcends just heart conditions. There are many disabilities which can, on some days, be seriously debilitating and other days, not quite so much.
You would be amazed by the myriad of baleful stares I gather whilst parking in a bay for disabled people, until I exit my car, titanium and carbon leg first, followed by the rest of me, Uzi 9mm in hand, screaming “DEATH TO ALL NORMALS! YOUR TIME ON EARTH IS NEARING IT’S END!!!!”
6. “How to introduce it while dating”.
I am always grateful for how lucky I was to meet such an amazing lady as my dear wife Bipana but to be honest, if she can deal with the nonsense I talk most of the time, a heart condition and one leg are a walk in the park.
However, the fear of facing “that conversation” was a very real barrier when it came to any kind of prospective relationship. Even once that wall has been broken through, some people get pretty far down the line before they decide it’s all “too much to deal with”.
Of course, not everyone has the capacity to deal with the “smorgasbord” (flowery noun courtesy of my friend Graeme) of potential problems but that doesn’t make it any less painful for the person who doesn’t have the option of walking away from it all.
It is an ever present worry for most people with a condition that will have a long term effect on their lives.
7: There is no condition in the world called “Heart Condition”.
If you think that I have contradicted myself several times through this post then please consider this fact. The term “Heart Condition” covers a “plethora” (that one is from Ashley, another friend) of different health issues.
Too many times, when I’ve spoken of having a heart condition, people have interrupted me to say something like “I don’t think you’ve gotten that quite right”. Usually because they either know somebody who has a condition or (and this is much worse) have one themselves.
They, more often than not, know exactly what they are talking about, however not once when correcting me has anyone ever been talking about my specific problems.
So, if in one paragraph I say something and then make a total liar out of myself in the next, it’s just because I’m foolishly trying to write a blanket post about “a range of different health issues”.
On a final note, it is worth understanding that, while a central chest scar is the classic indicator of someone with a heart problem, such problems are many and varied and some require a wholly different approach.
There you are, seven things we wished you knew about heart conditions and (assuming you haven’t just skipped through to the end), now you do.
Let me say one more time that this isn’t a “how dare you not know these things” post but rather a “hey, here are some things you might not know” post.
Thank you for reading folks, stay safe and be excellent to each other.