To the people who don’t ‘believe’ me about my illness

To the people who don’t ‘believe’ me about my illness,

I’d like to start by demonstrating a level of compassion I don’t always feel I get from you after appointments or assessments. You have a hard job. You have to work out who deserves what help or treatment, the type of help people receive and justify your reasons why. I imagine you have stringent criteria you have to follow and that you are under scrutiny to meet targets and statistics just like everyone who works in the public sector seems to be facing, along with time limits for appointments. I see you as a person doing a job and don’t immediately assume that you are ‘out to get me’ just because of your job role and the fact the system doesn’t always work well. I’m sure you have a personal life which has an impact on how you are feeling during that day and how you interact with me. That said, I trust you to be professional.

Do you see me as an individual? Or have you already made up your mind based on my medical file and the way I walk into the room or what I look like? Do you keep an open mind? Do you listen to what I’m saying? There are some things I wish people took into account when deciding on how to help me:

I have a rare illness. It confuses lots of people, including consultants and specialists. Just because you haven’t heard of it doesn’t mean it isn’t real. You might have experience with lots of illnesses, you might think you’re good at sussing people out or that your quick google search tells you everything you need to know. But it won’t because there isn’t an awful lot about it on google. I know this because I get a lot of people visiting this blog looking for help which they can’t find on google. With respect, you can’t possibly have an accurate picture of what it’s like to live with my illness so don’t just assume I’m lying or over exaggerating when I explain. It’s isolating enough as it is being a rare illness patient without you highlighting it further.

It’s taken a lot of courage for me to admit I have a problem that I need help with. I had to leave a career in teaching, which I was good at. My husband has to look after me. I’ve lost my independence because I can’t drive or walk far. I have to ask people to babysit me because I can’t cope by myself in the evenings if my husband wants to go out and do something I can’t physically manage to do so can’t join him. I’m not yet 30, and I’m having to explain to you that I can’t always wash myself or need to be reminded to eat and can’t be trusted to sort my medications myself because I get it wrong or forget. I wish I was making it up, because it’s humiliating- I wasn’t always like this, I used to be fiercely independent and refuse all help from everyone. My illness has made it so that I’ve effectively got the same (or less) function as a pensioner. But I’m only 29, it feels like I’ve failed because I can’t function myself and now I also have to ‘prove’ to people that I’m as sick as I say I am so I can get the help and treatment I need.

It’s bloody hard getting out of bed everyday but I do it because I don’t have a choice. I’ve found ways to cope a bit because I’ve had to, but it doesn’t mean that I can. The thought that I might get the help I need, or see a new specialist who can help, both which might mean that things might get easier at some point in the future because of it is the only reason I get up some days. Telling myself ‘you’ve got this, get through the next 5 minutes, or the next hour’. Otherwise, why bother? It’s a miserable existence, made more miserable because I’m having to ‘prove’ how sick I am with an illness that no one has heard of.

It’s because it’s so miserable that I made a conscious choice after diagnosis. I don’t want to be the type of person who is defined by their illness. I have an illness, but I am also a person. I don’t want to play the ‘poor, chronically ill’ person. I want to laugh about it because it’s better than crying. I hide or ignore most of my symptoms every day because I don’t want the constant reminder of everything I’m missing out on because I’m sick. But, because I ‘don’t look sick’ you assume I’m making it up. I wish I was making it up. What does a chronically sick person look like anyway? Why do I have to ‘look’ like some stereotype? If someone were to make assumptions based on looks about sexuality or skin colour, it would be classed as discrimination. Why should invisible illness be any different?

Listen to what I’m saying when you ask me questions. Visual assessments are a good indication, but they can be misleading. And you’re a human. If you already judged me before the appointment started, your observations are already likely to be prejudiced or biased so you only see what you need or want to see. That’s human nature. It’s also impossible for you to be able to observe everything and type at the same time, particularly if your computer is angled away from me. Are you sure you saw every physical response and facial expression?

It’s also worth remembering that anyone can fake being sick, it’s faking looking well when feeling terrible that’s hard. Personally, I worked on looking well when I wasn’t while I was teaching so as not to worry my students. Other people do the same because they’re parents and have a similar ethos, or because their job requires it or various other reasons. So it’s a catch 22 for people like me: if we ‘act sick’ at these appointments we’d be lying. But if we don’t ‘look sick enough’ you assume we’re lying even when we’re not. What do you suggest we do? I genuinely would like to know because my brain fog means getting to the appointment and answering your questions was hard enough, never mind trying to work out what part you’d like me to act as well.

You have no idea what happens when the appointment is over. Or the preparation and logistics beforehand either. Did you know that attending your appointment is the only thing I did that week, because the energy involved wrote off the rest of the days? But you still want me to ‘prove’ it to you.

I’m sure there are lots of people who waste your time and demand help that they shouldn’t be entitled to, and it’s your job to work out the real from the fake. A lot of people who genuinely need help don’t want it and would rather be sat anywhere else but in your waiting room, but have to ask for it because they’ve got no choice. It’s a humiliating experience and it isn’t an easy process emotionally. So I’m asking you to bear the following in mind before making decisions:
– read my medical reports but don’t assume that you already know everything you need to know beforehand. Otherwise why bother asking me to come in?
– if you need to do extra research about my condition, please do it. Don’t just assume it’s not real because you haven’t heard of it.
– I understand the need for expediency but it’s really hard talking to someone who is typing all the time, especially if you can’t see their face. Look at me when I’m answering. At least then we can be sure your observations might stand a chance in being vaguely accurate.
– listen to what I’m saying. Ask more questions. Listen to the things I’m not saying but probably should be- read between the lines.
– I’m a human being with a story. If my treatment or support plan was to be decided based on an algorithm, a computer could do that- you wouldn’t have a job and I wouldn’t need to meet with you.

Yes you’ve got your tick box criteria, but disability doesn’t fit into boxes. And if you’re suggesting it does, your criteria needs changing because it’s discriminatory. Use some compassion and some thought. How would you like to be treated? How would you feel if you were me?

Appointments where you’re having to ask for help or are trying to access different treatments are stressful. You could make it a bit easier for us.


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