What it’s like to have a chronic invisible medical condition

I just got sunburnt in the middle of winter after taking a painstaking level of precautions because I went out for a team lunch and was dumb enough to sit facing a window. I had meticulously reapplied my sunscreen throughout the day, treated all exposed skin with a soothing moisturizer as soon as I reached the office (before I even felt the burn), drank ample water and even took an anti-inflammatory tablet just to be safe. Also, the windows were at least 15 feet away from me.

Why did I still get sunburnt? Well, I suffer from a chronic, mostly invisible medical condition called photodermatitis or photosensitivity, which is a severe sensitivity to the UV rays. What this means is that I get sunburnt very easily in the presence of sunlight, irrespective of the season, the time of day or the duration of exposure to sunlight. So I have to wear sunscreen throughout the day. At one point when my condition got too severe, I even had to wear sunscreen indoors because the radiation from electronic screens and certain lightings seemed to cause a reaction (as theorized by the dermatologist I was consulting back then, but I can’t really say if it is true).

As I’m typing this, I’m running a mild fever. My face and hands which were flushed red a few hours back have finally started calming down. Parts of my face and hands are throbbing in pain, parts of them are tingling but overall it just feels slightly burning as if I’m sitting too close to the fireplace. I am quite dehydrated and feel like I can drink a gallon of water in one go and it would still not quench my thirst. I have no appetite and am completely exhausted. (These are all when my sunburn is on the milder side, so you can imagine how it would be when it is severe.)

I keep spritzing aloe vera juice to calm my raging skin, seal off the windows with thick curtains and cloak myself in darkness to prevent further irritation. Despite not having any appetite, I consume water-rich, antioxidant-rich and soothing foods to heal faster. I occasionally give myself a cold compression on the areas that are still red. Once I stop looking like a tomato, I apply oils and moisturizers to seal my skin.

The weird thing though is that I will look normal by tomorrow, but will feel far from it. My skin will look fine, maybe even better than usual since I pampered it for a whole day. My fever would hopefully be gone. However, my skin would still have a continuous warm/burning sensation. Parts of my skin would still be hurting constantly. I would still be dehydrated and have no appetite. My energy levels would still be inadequate. I reckon I will be sleep-deprived which would cause its own set of issues like absent-mindedness and caffeine dependence. A person seeing me tomorrow would think I’m absolutely fine when in fact I am pushing through a lot of invisible symptoms.

Let us take the 2 keywords of chronic invisible illnesses and see how my condition partially fulfils it, shall we?

> Chronic – While this is a condition that can usually be managed if I plan my life properly, it is a problem for me because I live in a place which receives ample sunlight throughout the year and the UV index is quite high during the day. Even if I plan to a tee and try to shroud myself in the darkness, sunlight has a way of trickling into my life, literally and figuratively. This means I’m constantly getting mild sunburns year-round.

> Invisible – While sunburns are usually visible, I get them in different severity, ranging from mild invisible burns to visibly red and peeling burns. The burns may not always be visible but hurt immensely and usually hurt constantly for 2-5 days.

Although my condition is not an illness and won’t be listed as a chronic invisible illness, I do get a glimpse of that world now and then. Since I often walk in the shoes of chronic invisible illness sufferers, let me take the liberty of listing what it is like to be one:

  • Lacking energy

In general, people having any chronic illness or disability have a reduced amount of mental and physical energy available for activities. This concept can be explained by Spoon Theory, a term coined in a blog by Christine Miserandino (FB page here). The term “spoonie” is used to refer to people with chronic illnesses (usually invisible).

The idea is that if energy is quantified as spoons, people with chronic diseases get only a handful of spoons each day and every seemingly simple task like getting out of bed, showering, getting dressed, etc., takes up a spoon. When the spoons for the day are gone, it means there is barely any energy left to do anything else and the person gets exhausted.

  • Being labelled as liar/hypochondriac/attention seeker

Unfortunately, some people don’t seem to believe things that they cannot comprehend or that go against their beliefs. Take my case for example. When I tell people I’m allergic to UV rays, those who are allergic to unfamiliar things try to dismiss my statement as much as possible. Sometimes, they show their disbelief blatantly and other times they make snide remarks mocking my condition. I can actually write a separate rant post with all the ludicrous things people have told me. Maybe even make it into a series with how I wish I had replied.

Having a chronic invisible illness means that some people won’t believe you and won’t even take the time to listen to your explanation or do a simple google search. It literally takes seconds to look up something, but such people just don’t have the will or patience. So you will have to listen to unwanted disapproving and/or dumb statements all the time.

  • Getting used to people trivialize and/or dismiss the condition

Of the people who don’t let out that they don’t think your condition is real, there will be some who speak as if they understand your plight but actually don’t. They may either not believe you but pretend like they do, they may be indifferent about it but use it as small talk fodder or misunderstand the problem to be of much less seriousness.

Where I come from, sunburn is a rarity. Almost no one I know has heard of it and I’ve always had to explain what it is. Honestly, no matter how many times and how well I describe my condition, most people dismiss it saying that they also feel hot in the sun. As if sweat and sunburn are the same!

Earlier, I didn’t bother explaining about my condition since I usually won’t have the energy while I’m going through a sunburn. And once the sunburn is healed, I just didn’t feel like talking about it because I don’t want my life to revolve around my condition. This made it easy for people to dismiss my problems since they can’t even visibly see anything wrong with me. Nowadays, I try to put in the effort and explain, at least to the people whose perceptions of me will have an impact on my life.

Having a chronic invisible illness means that most people will never really understand the gravity of your condition. Your condition may be a huge ordeal, but people will trivialize it and brush it off as something faced by everyone. You may find yourself just accepting this and moving on since you won’t have the energy to educate every acquaintance. You may even write a blog like this one or look up links and send to people so they can understand.

  • Being defined by the condition

While most people may not even understand your condition, more often than not, they will define you by it. This is particularly annoying when the people who downplay the impact of your illness also end up associating your illness with all your decisions, likes, dislikes, belief systems and basically your entire existence.

  • Having to smile through sufferings and pretend that its all just fine

Because of the above points, people end up hiding or downplaying their illness, sharing it only on a need to know basis. That means they have to pretend that they are absolutely fine all the time. Even if they have shared their illness with everyone, they cannot appear to be ill all the time or they may get ostracised in their social circles. They have to put a facade of being fine from time to time, either for the sake of society or to try and trick their own mind into believing that they are fine.

When your pain is often the source of some people’s laughter, mockery, judgments and useless advice, you have no choice but to hide it from everyone because you don’t know who would react how. Even if you are surrounded by the best people, it can get mentally draining to show your distress to the outside world and keep talking about your illness. So at least for a change, you end up hiding your sufferings from time to time. Then there are times when you don’t even have the energy to go on about your day, so instead of trying to explain or argue with people, you just put on a smile and move on. You sometimes end up feeling alone, guilty, helpless, useless, frustrated, angry, sad, empty, etc., but you still smile through it all and pretend that its all just fine.

  • Holding in tears of pain to avoid being seen as weak and sensitive

This kind of adds onto the previous point. Sometimes chronic invisible illness sufferers might face a hard time when they are literally brought to tears. However, since tears are associated with weakness, they have to hold in their tears or cry in solitude lest they are misunderstood.

I’ve sometimes cried in my office cubicle or restroom stall during summer because the pain just won’t go away and I don’t want to be caught crying at work. This once put me in a particularly embarrassing situation when I accidentally let out a tear during a discussion. This also happened to be when my senior was giving me suggestions on how I can improve my work. I think he pretended to not notice, but I’m pretty sure I left an impression that I don’t take criticism well.

When you are constantly in pain and sometimes even get to the verge of tears, you wouldn’t want to let it out for fear of being seen as overly sensitive and weak. Being called weak can especially hurt because you have worked so hard on becoming mentally strong and hustling despite your illness.

  • Ignoring people’s assumptions that you are lazy because you just can’t give a spoon

In my case, people often assume I’m lazy when I don’t want to go out in summer. Having tasted sunburns multiple times, I simply don’t want to experience it anymore. Every summer expedition that I’ve taken for the past decade has left a physical scar on me. I now see them as a reminder of my foolishness and a cue to say no every time someone coerces me to go out in summer. Let people call me lazy, but now that I know the consequences of a “fun” trip to the beach or the mall, I’ll no longer risk myself of skin cancer just to please friends or fit in.

Having a chronic illness means that your schedule and the schedule of those around you cannot always sync up. You constantly say no to plans because social activities take up a lot of spoons (refer the spoon theory), but some people will think you are lazy or don’t care about them. You may even lose friends because you never hang out with them much anymore. While acquaintances will automatically assume you are lazy, some friends may think that you are just using your health as an excuse when you are just too lazy to go out.

  • Tackling people’s assumptions that you are incompetent

At work, when I used to be a feature developer, some people assumed that I wasn’t skilled enough when I put in more hours than what they deemed necessary. Being extremely driven, what I lacked in health, I compromised with hard work. If I wasn’t feeling well and had to do my tasks at a slower pace, then I’d stay at work even till 9pm and complete my tasks. This was seen as a sign of incompetence. Even if I took a day off, I’d start working the moment I felt better. Yet the gossipers only talked about how many leaves I took. I made the mistake of not being clear about my condition with everyone because I didn’t have the energy to explain. This made it easy for people to believe the gossips and assume the worst.

I used to be constantly induced with frustration, guilt and worry at the same time. Frustrated because the people who gossip had no idea how much effort it sometimes took me to just be up and about. Guilty because it just didn’t feel right to take leaves. Worried because I wanted to deliver my features as soon as possible so that the tester is not blocked to do their work. This cocktail of emotions coupled with constantly wearing the nightcap made my health worse.

Luckily, I took up a role in a new team that mostly involves working independently. From day one, I made sure that people knew I had a health issue but it won’t affect my work (since no one is tightly dependent on me anyway). I worked hard to give people confidence that even if I took a lot of leaves or work from home, I would still complete my tasks promptly and properly.

I still work in the middle of the night at times to meet deadlines, but I feel happy doing this. This kind of work has given me so much more flexibility and peace of mind that I am actually proud of my work now. However, not everyone has the luxury of choosing their tasks or working in a flexible team that values your work output rather than how long you stay in office.

Having a chronic illness often makes you slow down and/or stretch. If it is an invisible illness, some people are going to call you incompetent or uninterested to work. Let’s face it, no matter how much effort you put in making yourself clear, no matter how great the people around you are, everyone does not have the time, patience or energy to try and comprehend your situation because they have their own problems to deal with.

Some people who don’t get you may even try to put you down. They might even think that they are being proponents of justice by exposing your flaws (when what they are doing is simply gossiping). Choosing whether to let them judge you as they like and underestimate your capabilities or explain your stance to them is tough. You know you need to set things straight, but explaining is going to cost you a huge chunk of your limited energy.

If you don’t nip this in the bud, you may even get targeted. Since you don’t have the energy to defend yourself, people will start seeing you as a pushover and may take credit for your tasks and push the blame on you for their mistakes. When you are low on spoons, it is tough to choose whether to simply accept the incoming attacks to prioritize your health or defend yourself by borrowing spoons from the future, only to get exhausted for the next couple of days.

  • Missing out on events and feeling like a flake

Being an introvert, I’ll admit that I don’t always want to go out, but there are events and get-togethers I really look forward to attending, even in the summer. Occasionally, I fall sick on such days and have to cancel at the last minute. This leads to feeling sad for missing out and also guilty of flaking out. I should thank my friends for still remaining friends with me despite the fact that I’ve made many outing plans flop.

When your health status is on a random roller coaster, you end up not taking part in events you like and cancelling plans last minute. You feel like you are always planning for the future by taking precautions and having back up plans but at the same time, you feel like you can never plan for the future because you can’t predict your health status. When cancelling plans becomes a trend, you start feeling guilty even though being sick is neither a crime nor your fault.

  • Not knowing how to respond to “You look good today” when you are writhing in pain

Due to the nature of invisible illnesses, it’s hard for us to tell if someone is suffering or doing good. It can get frustrating for a chronic invisible illness sufferer to get compliments on the bad days because pretending to be fine takes up its own energy. Now they have to decide whether to play along and end up lying that they are feeling good when they are not or explain how they are not doing good and end up giving an impression of complaining when they look fine.

Particularly on the days that I’m sunburnt when I go off cosmetics and just apply oil on my face, I often get comments like “you have great skin” or “your skin is glowing today. What products do you use?” I don’t know how to respond to this, especially because I am in so much constant pain and experience such a burning sensation that it feels like my skin is going to peel and fall off any second.

When you have a chronic invisible illness, getting complimented for things that are the opposite of your reality can be awkward. It can also leave you annoyed when the compliment was just namesake. You want to roll your eyes at flattery, but don’t because that would take up some of your precious, already sparse energy.

  • Having to convince pivotal people in your life that your illness is real

Unfortunately, it is not easy for people to empathise with invisible sufferings. When the signs of the illness are visible, most people are very uplifting and supportive. The same people usually don’t even get what is wrong with invisible sufferers. It can take some time to convince them that a given illness is real, after which it could take months, even years, to make them fully understand it.

When you suffer from any medical condition, you would want some understanding from the key people in your life. They don’t even have to comfort you; just not dismissing your problems is good enough. Whether it is your family, friends or your manager, you need to work hard on explaining your invisible illness because it just isn’t apparent to them. If it is a rare condition or the people in your life haven’t heard of it, then it takes more work in convincing them that your illness exists.

At first, you have to endure the pain of being misunderstood by people important to you. You may not always be able to explain your case since you frequently lack energy. Sometimes, chronic pain puts you in a sort of meditative state, so you end up temporarily not caring about what others think. Other times, you want to share everything about your health to the people close to you, but may find it difficult to convey all the complex concepts about your condition that even you understand only partially after all the research you’ve done.

  • Getting used to doctors not believing your words

Possible unpopular opinion alert! This seems to surprise some people, but doctors are not prone to laziness. Instead of taking the time to understand a patient’s symptoms and history, some would rather take the easy and lazy approach (coz more patients consulted equals more fees collected).

I’ve had to convince some doctors that something basic like sunburn is real because no one gets sunburnt where I live. Seeing doctors who are not up to date may not pose a huge problem for something like the common cold, but when you have an invisible condition that is rare, you are most likely to get misdiagnosed or told that it is all in your head and you should just calm down.

You can’t blame the doctors though. Apparently, there is this trend where people look up their symptoms online and misdiagnose themselves before going to a doctor and argue with them. So even a capable doctor is going to be sceptical about the things you say if it cannot be measured and the symptoms are scattered all over the place.

Imagine opening up to someone about your very personal experiences and making yourself emotionally vulnerable when that person doesn’t want to hear what you have to say. To top it off, this person is in charge of fixing your problem, but instead of trying to understand what you are going through to help you, they are dismissing your points, giving you unsolicited advice and maybe even judging you. Yup, you’ll get used to it when you’ve consulted enough doctors.

  • Being sleep-deprived and facing brain fogs

With any chronic medical condition, comes occasional sleep deprivation. Sometimes people may go up and about on days when they should be resting either because they misjudged the intensity of their symptoms or they have an important occasion that cannot be missed. At times like this, it can be hard to spend energy on thinking, because most of their brain activity is focused on pretending to be fine.

They have to deal with their pain and also constantly focus on how they appear by tailoring their posture, expressions and body language. So the brain has less capacity available for processing. Being sleep deprived compounds the problem of brain fog. It could even take conscious effort to come up with the answer for what is 2+2.

  • Developing empathy and being non-judgmental

On the plus side, having a chronic, mostly invisible condition makes me empathetic and non-judgemental. People have said that they can tell me anything without feeling judged and have shared things they didn’t feel comfortable opening up to anyone.

When you yourself are being judged a lot and take extra measures to hide something that isn’t even a fault, you cannot afford to judge others. You don’t even have to try; it just becomes second nature to be empathetic and non-judgemental.

There are some more points, but this post is too long already and I’m too tired to go on. My condition usually doesn’t hinder daily life. It just involves an annoying level of planning on a daily basis and I occasionally tiptoe onto the shoes of spoonies. This itself is so hard. So imagine the amount of suffering someone with a more serious health issue that is invisible and chronic has to go through.

If there is one thing I want you to take away from this post, it is to not judge people. You never truly know what someone is going through. Even if you cannot lend an empathetic ear to everyone, don’t jump into conclusions or go off giving unsolicited advice to anyone on how to live their life. That is all I ask. Peace out!

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