Chronically Ill Kat

I became sick in January 2015, or potentially earlier if I look back over my health records from the years before that. I did not receive an official diagnosis until September 2018. That is almost four years later. This is by no means unusual – in fact, some would consider it a very quick diagnosis for a chronic illness. Doctors had, during the years before my diagnosis, mentioned the name chronic fatigue syndrome, and I’d even been to the specialist in the UK twice; but nobody seemed to want to give me a piece of paper stating that I was sick.

So, when the time came that I was certified sick and was given my official diagnosis, I mostly felt like celebrating, not commiserating. But why was I celebrating being told that I was definitely and most likely indefinitely sick? Whilst this may seem unusual, for many with chronic illnesses, or other types of disability, a diagnosis is an incredibly useful tool.  

There is a common misconception that being diagnosed with an illness is necessarily a negative thing, and some people even think that it is bad for you. There is an idea that having a diagnosis will enable sick people to become sicker, because people claim that you can train yourself into having an illness, or becoming more symptomatic. The idea is that, when people are searching for a diagnosis, and when they are grateful for it, they are looking for excuses or attention seeking.

The other issue that people raise about diagnoses is that people become complacent with their diagnosis and start to define themselves in relation to it, rather than “overcoming” their illness or disability. These ideas are particularly prevalent when we talk about invisible illnesses, neurdivergence, or mental health diagnoses. I would suggest that this idea is deeply rooted in the ableist narrative that we should not be defined by our illnesses and that we have control over how much we are affected by them.

Over time, I have become increasingly aware of how harmful this discourse can be. In my case it meant that, whilst doctors knew what they suspected my illness was, they weren’t willing to make it official, which, as I will talk about later, brings about a lot of difficulties. In the case of a friend who was recently diagnosed with ADHD, he really struggled feeling valid in his illness, and believing that he wasn’t over-exaggerating things after friends of his advised him not to connect too much too his diagnosis, as it would just encourage him to take on more ADHD characteristics.

These comments come out of internalised ableist ideas and what people sadly miss when they make these comments, is the importance of a diagnosis in the life of a disabled person. Living without an official diagnosis is an incredibly difficult experience.

Practicalities

Not to spend too much time on this, but one reason that a diagnosis is very important is that a diagnosis often brings with it access to accommodations, benefits, and legitimacy in the eyes of the government. Obviously, this depends somewhat on what the diagnosis is. With something like CFS/ME it is still a battle to get official recognition, but with other disabilities it can open the doors to help. Without a diagnosis it is harder to prove that you are in need of that extra support, accommodations for your disability, or to prove that you cannot work.

In the Netherlands, for example, without a diagnosis, insurance is less likely to cover mental health support. Alongside this, again depending on your illness/disability, a diagnosis can give you access to a treatment, medication, or mobility aids, covered by insurance. All of these very practical things make getting a diagnosis a very important step in learning to live with a disability and finding the right support.

As an example to illustrate this, when I was at university I was very sick, but had yet to be given an official, written down diagnosis. This meant that, when I asked for extra accommodations for things such as the attendance policy, or a little more flexibility around deadlines, it relied on individual professors believing my story, and meant that the institution gave me no official support to help me get through my bachelors.

Thankfully, this mostly worked out for me, as many of my professors were very understanding of my illness. But there were occasional instances where I did not get the support I needed and even got a lower grade for being too sick to attend certain classes. Had I had a diagnosis, I would have felt validated enough to demand more help, and the institution would have been required to give me far more support than they did.

Living with an undiagnosed illness, especially when you are unable to work, or care for yourself without support, is incredibly difficult, and getting a diagnosis can be the difference between having an income or not.

Validation

When living with an invisible illness we spend our lives trying to prove to people that we are as sick as we say we are. As a community, many of us are doubted by doctors, family, friends, teachers, bosses, the list goes on. If they can’t see anything wrong, they often do not believe that we are sick. This is made even worse if you are told by your doctor that there is nothing wrong with you, or that it is all in your head. So, for me, a big challenge is believing that I am sick and not just lazy. I can go two weeks lying in bed, unable to care for myself, but if the next day I can walk to the supermarket, I immediately start questioning if I should return to work, and if I am better.

Once I received an official diagnosis of my illness, I had some form of validation that my sickness and suffering did not come from laziness, but instead came from my disability. It gave me less room to doubt whether I was sick, and therefore more room to actually process the changes in my life, and come to accept them, without constantly questioning whether I was making it all up. I won’t lie and say that I never question: I still do, but I am far more trusting of myself now that I have doctors who have told me that I am sick, and have even told me that my body has the functionality of an unfit 69 year old!  

A chance to process the disability

A diagnosis gives you the chance to process your disability. Not only was I validated by my diagnosis and was able to release some of the doubt, but I was able to set my expectations for the future, and adjust to the new reality in which I now I lived. With a diagnosis, I was able to learn that it is possible to recover from ME, but that many people live with it for their entire lives. I was able to begin the process of adjusting my expectations around getting better.

For me, this meant realising that I wouldn’t be getting better in a year, and that if I wanted to get better I had to take it slowly, stop boom and busting, and stop feeling guilty that I hadn’t achieved my goal of doing a Master’s degree. Understanding what you are adapting to and accepting is such an important part of learning to live with a chronic illness or disability, and to do that, some sort of label is necessary. It gives you a framework within which to set your expectations.     

Part of accepting and processing a disability also concerns learning about yourself and your illness. If I use my ADHD friend as an example, part of his journey to accepting his diagnosis has been about learning the different ways in which ADHD has affected his life in the past, and currently affects the way he thinks and interacts with people. He has done this through learning about the ways in which an ADHD brain works and comparing this with what he knows about his own life.

To the outsider, this may look like he is adapting the way he behaves to fit his diagnosis, but in reality, he finally has the correct words and concepts to understand things which have been difficult for him for his whole life. He is finally able to talk about this, because he understands it. By not letting him explore this identity and this label, his ability to understand himself is removed, and he is unable to learn how to live in a way that is better for his mental health.

This has also helped our relationship because it has allowed us to explore the ways in which we deal with moments that, in the past, may have been tricky. Now that we understand why they were tricky, we have been able to work out methods of interacting that avoid these negative interactions. These have all been important parts of processing things in his life that were previously difficult, and are reflections that were only possible through gaining an understanding and embracing the diagnosis of ADHD.

You can find a community

One of the most useful and liberating things about getting a diagnosis has been finding and interacting with a whole community of people living with the same illness. Not only does that make me feel less alone, on days when I can’t leave my bed, or on days when I’ve had a bad doctor’s appointment, but it has also helped me to learn so much about myself and my illness. I’ve mentioned it before and I will say it again, on repeat if necessary, finding a community of people struggling with the same issues has completely changed the way in which I deal with, relate to and live with my disability. I would not know where or how to find these people without having a diagnosis (or even some form of self-diagnosis, which makes for a whole different article!).

So why was I happy?

I was incredibly happy to get my diagnosis, because a whole new world of opportunities for me opened up for me and I could give a name to the intense symptoms that had been plaguing me for years. I no longer felt as if I was lazy, a waste of space and not trying hard enough, but had not only an answer to my confusion, but also access to endless resources on the internet. Whilst people may not always be happy to receive a diagnosis, I think we can all agree that it is an incredibly important step in the life of someone with a chronic illness.

I do just want to add that, once you have a first diagnosis, this may not be the same when learning about co-morbidities. I know that there are some other illnesses I suspect I may have but for which am not yet putting in the effort of getting a diagnosis – because I now know I am sick, have proof of that, and know that there is no treatment for the illness, it would be a waste of my energy. This situation is a little different from that of going from living with completely undiagnosed symptoms to living with some form of official diagnosis.

I wish those people who oppose the idea of getting a diagnosis would realise that, like many people with marginalised identities, having some form of label or identity marker (in this case a diagnosis) is important for self-identity, for finding a community, for finding validation in yourself, and for empowering yourself and your community – all key elements of mental flourishing.  

Whilst there is certainly much more to my identity than just my ME, it really helps that I understand it is now a part of me. And receiving a diagnosis was a prerequisite to my acknowledgement of this fact.