Chronic illness is hidden. I guess they call it an invisible illness for a reason, and whilst it isn’t entirely accurate to say my illness is entirely invisible, at a glance I do seem like a healthy young woman. If you knew me better, you might see the huge bags under my eyes, the slightly greyish tone of my skin when I have over-exerted myself, and the strange blotches of purple and orange that cover my legs when I’ve just come out of the shower or the swimming pool. But, to the unobservant, or to the stranger, I appear to be perfectly healthy. This means that when I meet somebody new, I have to decide when, how and if to tell them that I am sick. In other words, I have to come out as disabled. This seems like a very apt subject to discuss during Disability Pride month.
Many of us with chronic illnesses are amazing actors and actresses. We are used to pretending that we aren’t in pain, that we don’t have brain fog and that we aren’t tired. And this is fine and dandy when we have shallow interactions with people; but as soon as we begin to have more prolonged contact or a deeper relationship with somebody, we have to decide when and how to tell them that we are disabled. And this can be very scary and frustrating.
People’s reactions
Unfortunately, we live in a world where many people do not believe in the existence of chronic illnesses such a chronic fatigue syndrome (ME/CFS). So, when I have to tell somebody that I have ME/CFS, I am opening myself up to be judged by that person. They will decide in that moment if they believe that I am sick, if they believe that my sickness exists or if they think that I am making it up for attention. ME/CFS has been branded ‘yuppie flu’, so there is always the chance that someone will make a reference to this name, or to the general idea that I am just lazy. Disbelief or insensitive jokes are incredibly hurtful. Not only does this build on the shame/guilt complex familiar to many chronic illness sufferers, but it invalidates our suffering by refuting our pain and sickness. And being told that “I don’t look sick” or that I am “too young to be sick” is frankly annoying – given that I clearly am, so it is patently not true!!
In general, we don’t talk about chronic illness enough, so when telling someone that I have a chronic illness, I often find that the other person does not know how to react or what to say. This is fairly logical, but it makes it very awkward for me. What I dread is that I will be pitied. I often end up being in a place where I tell someone that I am now chronically ill and then spend the next ten minutes comforting them about it! I think I sometimes forget how crazy my life must sound to someone who is healthy, and I can understand that it is shocking. But I don’t want pity. I dislike pity because it feels like someone is making me into the caricature of “the sad disabled person”. And yes, sometimes I am that sad disabled person, just like sometimes they are that sad non-disabled person, but most of the time I am just living my life. Of course, it sucks being ill, but I don’t like being reduced to my illness. It ignores the rest of what makes me me. Alongside the pity I often hear things such as “I couldn’t live like that” – which, once more diminishes my reality, by implying that there is no point living if you are sick. Living a fairly fulfilled life as I do, I totally disagree with this.
How I come out
Of course, I can’t control people’s reactions when I come out as disabled. It will inevitably change me permanently in their eyes. But what I can change, is when and how I come out. And I find judging this incredibly tricky. I hate having to decide when I do it, and I hate having to present myself as sick. However, it is important that people know I am sick. I constantly have to look out for things that healthy people don’t, and so it matters to me that they understand why.
When it comes to making new friends, dating profiles, and job applications, the big question for many of us is when do we explain our sickness. If we do it too soon, we risk pushing people away or losing the possibility of a job; if we leave it too late, we potentially get into a situation that is bad for our health, and feel that we are being dishonest and misrepresenting what we really are. It’s a tricky call to make and the answer concerning what to do will be different for everyone.
My Method
The way in which I come out, and when I come out, is very dependent on the context, both in terms of how close the relationship is, and how necessary it is that the other person respects and understands my health situation. However, I have come out to many groups of people by now and have developed some sort of methodology.
Family/Close friends
Luckily, I have very supportive family and friends, so many of my them had already noticed the decline in my health. They were there with me, almost every step of the way – so I never really needed to come out. Having said that, we have had to have a lot of sit down conversations to talk about my illness and establish our friendships based on a new dynamic, one where I am no longer the energetic, up-for-most-things friend. To these people I have always been very honest: about the reality of my illness; about ways in which I need their support; and about ways in which they have unintentionally hurt me with unintentional words or actions. I was at least as honest with them as I was with myself, which isn’t always “very honest”! This felt a lot less like coming out and more like a natural development of our relationships. And for those close friends who were living in a different country from me, I think many of them were also involved in the process, even if it was over message and not in person.
Job applications
Unfortunately, I became sick during university and was too sick to get a job afterwards, so I have minimal experience of this. However, there was a short period of time where I was well enough to work, and I did have to figure out when to drop in mention of my disability. For a long time, I mulled over whether I should explain my illness in my job application or whether I should just pretend that I was healthy. In many ways I felt it was necessary to come out immediately, because I had a long gap in my CV which needed explanation, and I also needed certain conditions, such as shorter shifts than those advertised. However, I was very afraid that declaring my illness so openly would cause people to ignore my application or be a reason not to hire me.
In the end I decided to be very open about it, following the logic that, if they used my disability as a reason not to hire me, then I probably shouldn’t be working there anyway, as they would be less likely to accommodate my needs. As a result, during my interview, I spoke with my boss about what my illness meant – albeit I did end up downplaying it a little, which is something I do anyway – but I was fairly open, which meant that we both entered into the contract understanding the circumstances. And I ended up being very glad I had done this, because my boss was much more careful about my working hours than those of other people. I was able to work four hour shifts instead of the standard eight hours, and he was much more understanding if I needed to drop a shift or say no to a shift. I did end up overworking and getting sicker but, in retrospect, I think that was more about my inability to say no and my guilt about living off my parents than it was about anything else!
Of course, I was very lucky to be in a situation where I could afford to wait for a job where the manager was understanding. Had I been in a less stable financial situation, I can imagine that I might have made a different call. But, in general, what I have learnt from my experiences of working (even before I was sick), and from experiences of friends, is that you should be open and firm about what you need. So, the same follows with when you are working as a sick person. Being clear and demanding respect is more likely to bring you to a work environment that is less bad for your health – even if it means trying a few different jobs out.
Dating, relationships and friendships
There is a common theme here! When writing a dating app description, I had to struggle with whether or not I wanted to tell people that I am ill. It feels like it is an important and central part of my identity and my experience, so it is important that a potential partner knows. It also means that people who might see me as a burden or treat me with less respect when they discover the reality, are unlikely to contact me. However, I feel my dating profile should reflect my interests and the things over which I have control – and my chronic illness is not necessarily something I would use to attract people! In the end, I mention my illness but very lightly, in order to alert people to the fact that I have one, but not to spend too much time on it! I’m not sure how successful this is, but it was what felt right to me, which should always be a key part of the decision to come out as sick.
I found coming out as disabled particularly difficult when meeting potential new housemates. One of the very first things that people ask is “what do you do?” and by that they want to know what job you have. I have discussed my existential crisis response to this, in a previous post – but it is this question which often forces me to come out. As soon as I say that I don’t have a job, I feel the need to explain why. Unfortunately, this does not allow me to gauge the type of response this person is likely to give, and it forces me to centralise my disability as an identity characteristic. However, it does make it easier to explain that I am sick, because it is a natural moment in the conversation to bring it up. This is somewhat easier than having to find a way to slip it “casually” into the conversation, whilst trying to get to know someone – so in many ways it is also useful!
Coming out is an on-going process
Coming out with an invisible illness is an ongoing process. It doesn’t ever really end. My way of dealing with it has developed over the years as I have come to accept being ill. I was never really somebody to keep these things hidden, so I have always been very open about being ill. But the way I feel when I come out, and therefore the way I act has changed a lot.
When I first became sick, I was very ashamed of being so, and very uncomfortable with disability being a part of my identity. I was also angry at myself. And this was reflected in the way I talked to people about it. When I met a new person and I told them I was sick I would tell them with a lot of fake laughter – or tell them very bitterly that I spent my life “rotting away in bed”.
In retrospect, I’m not sure that this helped me get the response I wanted, but it was how I was feeling at the time. That meant that coming out as disabled was a very negative experience for me. I felt ashamed and felt sure that the other person was judging me and wouldn’t want to be friends with someone who was a burden. I just felt that I had to tell people so they could decide whether they wanted to take on the “burden” of my friendship or not.
Coming out is empowering
As I slowly came to terms with being sick, coming out became much easier. That is not to say that I never feel shame about being sick now – that isn’t realistic. I do. And I feel sad, and lots of other negative emotions about being sick. But I have also developed a high enough self-esteem, and have accepted my illness sufficiently to see coming out as almost empowering. I am reclaiming the identity of being disabled from the stereotype that people have of it, and I am instead looking out for myself. By coming out and telling people I am sick, I am opening up a communication channel about my sickness and allowing myself to frame the way in which we will continue to talk about my illness. This means that I am taking the space and demanding the respect that I deserve as a disabled person.
Obviously, when I did not accept my disability, and did not want to consider myself as disabled, it wouldn’t have been possible for me to find this empowering. But thankfully, now, I allow myself enough respect to pursue friendships and relationships with the people who will treat my disability – and me – seriously and properly. And coming out about my illness in a way that allows me to respect myself is my way of beginning such a relationship. Not only does it give space for me to be honest about my illness, it allows the other person the same opportunity.
As with everything, coming to terms with being disabled, and learning the way in which you feel empowered when you come out about an illness is a process that takes time. Thankfully, in a world where the assumption is that young people are always healthy, we have a lot of time to practice coming out as disabled. Whilst being open about my illness is the best way for me to feel empowered, it may be different for other people. But I would urge you to try and come out in a way that does not feel forced. See it, instead, as something you are doing for yourself, to allow you to be treated in the way you deserve, and to allow yourself to be disabled and proud. After all, July is Disability Pride month.
Links
- A wonderful video about coming out as disabled by Annie Elainey
I’m truly terrible at this. I never know when the right time is in a friendship, so thanks for this advice.
I agree. I defo still find it quite awkward. I guess it’s a matter of experimenting and trusting yourself and the other person. Good luck 🙂