Tuesday, 8 September 2015

Invisible Illnesses

I have numerous invisible illnesses and despite people knowing about invisible illnesses, they're still quick to dismiss you because you look healthy and you're young. My illnesses may in fact, improve as I grow older which I'll explain in more detail but they can still be difficult to live with.

The first one is Postural Orthostatic Tachycardia Syndrome (POTS) which I was recently diagnosed with. It's considered an invisible illness which can affect young and perfectly healthy people, but it can be so severe that people require disabled badges (which ultimately attracts negative attention), are unable to work or live a normal life. It's basically a malfunction in the autonomic system where your lower blood vessels don't constrict when you stand, so blood falls from your brain but doesn't return fully for a certain amount of time. Your heart then beats super fast, trying to get your blood pressure up to normal but by then, some people have fainted or like me, gone blind and extremely dizzy. When I'm having a small episode, I look perfectly fine and like there's nothing wrong. I just kind of freeze or I might show a face of discomfort for a few seconds until I regain my sight and the blood returns. This condition comes with a whole host of other symptoms like nausea, anxiety, dehydration etc. This is a condition which may improve seeing as people often get high blood pressure as they age. Thankfully, it's not totally debilitating and I've never fainted, but if I ever do, then I know I'm unwell or it's getting worse. I have had really bad days in which I've felt unsafe to drive due to constant dizzy spells and losing sight.

My other condition is Joint Hypermobility Syndrome (JHS), though I'm pretty sure it's Ehlers Danlos Syndrome (EDS) but seeing as I love having syndromes which are notoriously difficult to diagnose, they're refusing to diagnose me with it for no real reason. One doctor said that it could lead to depression but I already have that. All of my symptoms lead to EDS, including the random and regular bruising, as well as a messed up jaw. There's also some debate of whether JHS and EDS are the same thing.
Anyway, JHS makes me feel generally weak, like my joints are held together by tape which sometimes makes me fearful of doing some things such as yoga and I've made the choice to never do the splits again because it made me dislocate my knee. I've had shoulder subluxations (partial dislocations) just from swimming so that's a big implication. Pulling my handbrake in my car or sweeping often causes my wrists to detach for a bit which is a horrible feeling. I get joint pain/aches that are sometimes very sharp, sudden and very painful but manageable. The knee I dislocated is often the most painful area, understandably. This pain can happen for no reason or sometimes from minimal repetitive activity like walking. Seeing as I have weak joints, my muscles have to work twice as hard which tires them out quicker and can easily cause muscle ache. People with JHS don't respond well to anaesthetic either and may have hernias (which I've had). I'm more likely to develop osteoporosis and I strongly believe I will develop it because my hip bones grind together and click regularly (like every joint in my body). This will likely continue for my life, wearing the bone down. Standing or sitting for long periods can cause my muscles to tense up and basically lock me in one position until I uncomfortably stretch myself out. This condition will hopefully improve as I get older because people lose their flexibility as they age.

I also have Irritable Bowel Syndrome (IBS) which is more well known but is an embarrassing condition because of its stereotypes. Personally, it causes me severe bloating and incredible pain on bad days. I'm practically allergic to everything I eat which causes a reaction and I'm allergic to some alcoholic beverages. I once haemorrhaged from the back passage while on a college trip and I still don't know what that was despite all the examinations and the numerous doctors (doctors are awful nowadays).

POTS, JHS, EDS and IBS are all related. People with JHS/EDS, usually have POTS and/or IBS. Also, all of these can cause fatigue so I'm sure you can imagine how exhausted I feel.

So as you can see, I've got a lot on my plate as a 20 year old, however I look physically fit and healthy on the outside. People expect more from me and will make me do more things e.g. in work instead of an older person but I can struggle just as bad. I can generally exercise like anyone else and I can do a lot that others can do. I often wonder if I'm in more pain/discomfort than I realise, I've just grown so accustomed to it, I can simply ignore it and when it's "bad", it would be excruciating to another person. Idk, but us invisible illness people do get a lot of annoying issues come our way. My conditions might potentially prevent me from working full time in the career I was hoping for. No-one's going to employ someone who struggles to stand for long periods of time. I can manage in my current job because I get to sit down every hour and even that's not enough sometimes.

I won't lie. I have cried a few times over my health because I literally feel like an 80 year old woman. Nowadays, I'm too scared to do the splits/handstands/cartwheels because of my joints and I can't even do yoga because most of the time, it feels like I'll dislocate something so in some ways, it does hold me back but thankfully, it could be a lot worse.

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