Any person who has had any kind of struggle finding a diagnosis will tell you they’ve experienced doubt from medical professionals, friends and family and even themselves. We get labelled as ‘drug seekers’ or ‘mentally ill’ by the medical community when they can’t find an easy answer to our problems. They accuse us of being depressed or wanting drugs over and over again. The amount of times I’ve been asked the question ‘are you sure you’re not depressed?’ is ridiculous.
This doubt then spreads to your family and friends, they often think (sometimes vocally, sometimes not) that if the medical community can’t figure out what’s wrong with you then maybe you are crazy. Maybe you are just making it up. They will often say things like ‘have you tried just not thinking about it? Maybe if you just focus on not being sick, you’ll get better’ or sometimes they say nothing at all. Sometimes they give up on you all together. They stop asking how your appointments go because you’re a lost cause and they pretend your illness isn’t there anymore.
Most importantly, this doubt often spreads to yourself. Some days you’ll wake up feeling kind of normal (or so you think, it’s probably been so long that you have no idea what normal is anymore) and you start to think, ‘hang on, what if this is all in my head. What if I am just imagining these things.’ But then it hits you, your ‘good day’ ends and your debilitating symptoms return and you’re not-so-gently reminded that nope, you’re definitely sick. Some days you will try and pretend your symptoms aren’t there, you will push past them until you’re at breaking point. You will inevitably doubt yourself countless times during your period of being undiagnosed. This doubt is so toxic and the most dangerous thing you can do to yourself. You are not crazy, your symptoms are real and you will get to the bottom of this.
Having no idea what’s wrong with you is a scary thing. It’s like jumping of a cliff, except you’re stuck freefalling for an indefinite period of time. It’s like driving head on towards a truck except you’re stuck in that part where you see the truck, you know it’s not going to end well, you can’t change it, you just have to close your eyes and hope for the best. After many months pass, you stop thinking ‘am I going to get better?’ and start thinking ‘how much worse am I going to get?’ The fear of being undiagnosed comes from the many unanswered questions we have like is this going to shorten my life? Will I ever receive answers? Will I ever live a normal life again? It’s like being in a pitch black house all the time and expected to go about your daily life, except you’ve never been to this house before and the house changes constantly.
You try to block out the fear by just living in the now and taking each day as it comes but this makes it impossible to set goals and plan anything for the future. I bought concert tickets for an event a year away and every time I let myself get excited about it, thoughts of where I will be in a year with my illness haunt me. Will I even be well enough to enjoy it? There is nothing to comfort you with this fear, you just have to do your best to ignore it.
The same questions that create fear also create frustration. You’re frustrated at your doctors for not trying hard enough, for not telling you that sometimes it takes people years to be diagnosed. You’re frustrated at your friends and family for not understanding or for ‘forgetting’ that you are sick. You’re frustrated at the universe for making you sick in the first place. It’s way too easy to carry a lot of anger about being undiagnosed. You’re frustrated at the people who find out what’s wrong with them within a week because that’s how it should have been for you too. You’re frustrated with yourself for pushing way past your limits and making you feel even worse. Life is just so damn frustrating when you are too sick to function but you can’t explain why. This frustration begins to change who you are and how you interact with others. It makes you angry and bitter towards others. Losing control of your body is a very frustrating thing in itself. Not being able to explain why you’ve lost control of your body is even worse.
No matter how great your support network is, you will undoubtedly feel alone. You are surrounded by healthy people every day and you can’t help but feel as though its you against everyone else. When you go to social outings you struggle to keep up with everyone, you sit and watch others and can’t help but feel invisible. No matter how hard others try to include you, it doesn’t matter – you are inherently different. While there is a huge community of undiagnosed people out there, it’s still almost impossible not to feel isolated even within that community. We can bond as much as we like over our similar experiences but at the end of the day we most likely will all have very different experiences and different illnesses. As much as we try to come together and support each other as an undiagnosed community it does not compare to those who are fortunate to have a network of others with the same prognosis as you. We are not part of the healthy population, and we also sit on the outs of the sick population. We do not fit anywhere just yet, we just wait in medical limbo for an indefinite period of time.
Although being sick is not your fault, you can’t help but feel guilty for a lot of things. You feel guilty that you struggle to maintain friendships and are always cancelling plans last minute. You feel as though you are a financial burden on your family and hate that you no longer have your independence. The guilt will eat you up, convince you that you are merely an inconvenience to those around you. You will begin to hate yourself instead of your illness. You will feel guilty for asking for help, time and time again. No matter how many times you are reassured it’s ok and that they are happy to help, you feel as though you’re putting too much strain on your relationships. It’s the guilt that convinces you to try and do it on your own because it’s your problem and no one else’s. This is so detrimental to both your physical and mental wellbeing but the guilt convinces you that it’s the only way. You feel guilty that you can’t be the person you were before, that you can’t give nearly as much as you did before because all your time is taken up by your health (or lack of). You feel guilty because your partner turns into your carer, and because the life you planned together is no more. You feel guilty because people change their plans to suit you and your abilities. You feel guilty because there is literally no way you could ever repay the people that help you everyday, from the little things to the massive things.
Whether you’re a ‘jealous person’ or not, you will be. You’ll be jealous of every healthy person you see walking down the street. You’ll be jealous of your friends and family for having hobbies that you can’t. You’ll be jealous of people you love when they reach new successes that you can’t. You’ll be jealous when you see people having nice things that you can no longer afford because your bank is dedicated to your medical bills. You’ll be jealous when you see bad people, the worst of the worst, in perfect health – because it’s just not fair. You’ll even start to be jealous of other sick people – the ones who receive a diagnosis almost overnight. You’ll be jealous no matter what their prognosis is, they have comfort in knowing what’s wrong with them and you don’t. The jealousy adds to your isolation and frustration because you just can’t help it.
These six things are all connected and create a lot of difficulty for people living with an undiagnosed condition. I can’t tell you for sure that a diagnosis will fix these things but in a lot of ways a diagnosis would make them more bearable. Being sick is shitty, but being undiagnosed is worse. I battle all six of these emotions every day – some days it’s easier than others. It’s definitely not an easy journey but I’m learning to deal with these things as I go along.