Why Talking About Invisible Disabilities Is Important

Having a chronic illness is hard. Having more than one is harder. It makes life difficult in so many different ways. Navigating a world in which almost every person you meet is not like you makes things so much more challenging.

When I tell you I don’t know what not being in pain is like, the first response is likely disbelief. Or pity. Or a mix of both. But, it is true. I have been in pain every day of my entire life. I go to bed in pain, and the next morning I wake up in pain. It never stops. And for almost all of my 24 year long life, I didn’t have answers to the simple question of ‘why?’ I grew up thinking it was normal to be this way. That everyone felt what I felt, and got frustrated when peers, doctors and family simply didn’t understand.

Now, I have names for the conditions that ravage my body. Ehlers Danlos Syndrome is responsible for my lax tendons and ligaments and joints that dislocate so easily, my super soft, fragile skin, slow wound healing and constant fatigue. Postural Orthostatic Tachycardia Syndrome is responsible for my intolerance to heat or cold, irregular heart rhythm, frequent dizzy spells and episodes of raised heart rate. Eosinophilic Gastroenteritis is responsible for the almost constant gut trouble, the seemingly random intolerances to food, feeling sick for no real reason and episodes of intense abdominal cramping. I am unlucky that all three of these conditions, are rarely seen by doctors. On top of this, I have an undiagnosed issue causing almost constant kidney infections and renal pain, and scar tissue in my abdominal cavity from multiple surgeries to rectify damage caused by an ovarian torsion in 2012.

All of this leads to lack of understanding from doctors, looks of confusion on their faces when you recite your medical history, and a set of medical records four folders thick. No normal 24 year old has spend so much of their life in and out of hospitals and undergoing so much medical treatment after all. Alongside this, trying to navigate a medical system built by and mainly for, the large percentage of society that do not have ongoing chronic conditions, getting the right treatment and even taken seriously can feel impossible. It has taken many years to get the names for the conditions, and subsequently a semi manageable way to deal with them. I take medications and try to live as normal a life as possible, but this isn’t always doable.

There are days the pain is simply too much. Days I fight with my body, and get frustrated that I can’t just do things like other people do. That when I do try to enjoy a day where I’m feeling good and go out out on a day trip or to an event or anything that requires a long period of socialising, I end up having to take time after to recover. That when I do these things I still have to take medication and strategically take breaks, and all that time there’s the worry in the back of my mind that if I dare post about it online, someone will make an accusation that I’m faking and that because I can do X thing that must mean I can do Y thing. That people will talk behind my back and mock me, make accusations and ignorant comments, all of which I have experienced over and over far too many times to list.

This week has been invisible disabilities week, and I believe more effort needs to be made to educate people that not everyone that has a disability will ‘look disabled.’ That that expectation is not only ignorant but also very prejudiced. Just looking at me, you would not know the war I am fighting with myself every day. My story is unique to me, but it is by all means not unique to the community of people out there navigating the world with chronic illnesses and hidden disabilities.

Before you cast doubt and judgement, stop and think about it first. Everybody you meet is dealing with things you have no idea about. And above all, if you’re healthy and pain free, don’t take it for granted. I sometimes consider myself lucky that I don’t remember experiencing life without pain. I don’t have that healthy pain free past to mourn for. Your health is precious, and can be taken from you in an instant. You could very easily become that person you’re pointing fingers at, or someone you love. Keeping that in mind and just being kind makes the world a better place for everyone around you, after all.

Related posts:

Today large companies like Amazon, Google, and Microsoft, which have extensive experience managing large data centers, are offering customers to “rent” data capacity. This is great news for companies…