#1 Tips and Tricks - 6 things people with invisible conditions want you to know

(Pinterest scrolling came across this beauty!)

To get a perspective on what people with an invisible disability wish we could tell those around us as thanks to the media and how society conforms to certain norms, our own preconceptions of what a disability 'looks like' can become misconstrued. I'm attempting to reach out to those (and I'm guessing there are hundreds of thousands of people!) who have an invisible condition or a chronic condition which they hide from others and loved ones as it may not be obvious to anybody other than those with a trained medical eye. For example, Ehlers-Danlos Syndrome or a rare bone condition like myself.  This is why I get mega frustrated when people think i'm pissing them off on purpose because I couldn't make birthday drinks, when in fact I get pissed off with myself for being so knackered or in pain, but it's true. C'est la fucking vie! In recent years, I've learnt to not assume that someone is completely hunky dory just because they do not seem to be bleeding all over the floor.

I bet those who do have a hidden disability have learnt a nack and become experts in pretending they are feeling better than what they really are feeling. I completely sympathise with this. One quick piece of advice before we begin is that awareness of this problem needs to be influenced by how someone responds to a person who has a invisible condition. For example, if they do pluck up the guts to confide in you, for Christ sake do not tell them they don't look unwell or that they seem perfectly a-OK. It's not gonna make them wanna talk or feel any better about the situation. But equally at the same time, if they do look like utter shit or can see they feel like shite, don't make a big song and dance about telling them they look like death warmed up. 

A basic understanding of an invisible disability goes along the lines of just because they looked perky and well enough yesterday to go and run a mile but today they can barely move out of bed does not mean they are faking it. On the other hand, just because they looked god awful the last time you saw them but seem perky and upbeat this time does not mean they are getting better. It's a consistent thing. The markers of 'wellness' and 'illness' do not necessarily apply as they do with a person who has the flu. 

One thing I have learnt is that it can be unfair and make the person who is hiding their invisible disability in the first place feel the need to explain every time unpredictability hits them and their situation changes. It's easier, quicker and nicer to just accept your pals for what they are at the moment and work with what you both have. Honestly, having to explain why you couldn't make a social event really was the shitter and I for one hate missing out on the fun. Espesh if it's 2-4-1 cocktails on a friday eve. 

1. It is important to them that you listen & believe them

I bet those with invisible conditions and I can raise my hands to this that they have struggled to get a lot of people to take them seriously and trust about how they are feeling. Because you can't see a physical impairment, people automatically assume that you are lying about how things really are going at that moment in time. A basic rule is that if you wouldn't question how a person with a visible disability is feeling such as having an broken leg, you should not feel the need to do it with a person with an invisible one. 

2. They do not want to talk about it all the time

Personally I do not allow my disability to be a defining feature of mine. Yes I am slightly in denial but I am starting to come to terms with it all, v slowly. However, I am not a victim but at the same time I will not be singing and dancing and telling everyone and their dog. Up until creating this space and blog to discuss all things regarding hidden disabilities, I only told people when I really needed to. Probably about a handful of friends, obvs my family and then just the docs and hospital regulars. I could count on one hand how many people in my personal life knew about it all. This was due to my own fear of being judged, being seen as different and just wanted normality amongst it all. It's taken major guts to start this up but I want to generate a debate, a chat and a giggle to share stories and support each other. Not drag each other down which seems to be clogging up my insta and fb feed in recent years. Cheers social media. You've successfully screwed up a couple of generations right there. 

For this tip I would say let the 'disabled' person choose how they talk about themselves and how they want you to actually discuss it with them. Whether they like to label as a disabled person or a person with a disability or may be reluctant and just say it when it needs to be said (i'm definitely in this category!), it is up to them. It is their choice to reveal it to you but that does not mean you feel the need to keep harping on about it and asking 20 questions. I would say it is nice to know but it is also nice to pretend it is not there and to ignore it. Let them steer the convo and decide when is the right time to talk about it. 

3. People with the same condition are not the same

Though this is not really in my case with my hidden disability only hitting a 100 people in the world and 5 only diagnosed in the UK, for other conditions this is the case. Some disabilities display a enormous range of associated symptoms and issues. However, just because your pal has a certain set of symptoms of the condition does not mean your other pal has the same. It's safer for all parties concerned to not tell them airily that you know all about it. Cause I hate to break it to ya, you don't. No one does. Not even medically know it all doctors do sometimes. They are human too. Also another quick one, it is probs not best to tell your pals that your other friend has it a whole heap worse or has the serious version. It will save you hassle, I promise. 

Also from past experience of being pals with people who have similar conditions, it is important to note that even though they may have the same condition they remain different emotional beings with different needs. This means that the one size fits all reaction from you or your friend probably isn't the best approach to take. For example, some prefer to have a cheerful dismissal (also known as classic denial - my kind of style!) when they feel like shit whereas others prefer a bit of hand-holding and cracking out the wee violins! Whatever floats your boat I say! For some, they like to be right in the centre when they feel like utter crap and some like to remain in the small corner of peace and quiet. Some want hugs, for some hugs don't heal anything. It's all about being understanding and sensitive to the situation and try not to assume that their needs will be identical to another soul. Let them be.

(Can you see the vibe I'm going for?!)

4. Sometimes your help is not helpful

Now this sounds majorly brutal and savage territory we are hitting here but hear me out, I've had it in the pass. Let's just say if you are not the person's personal medical professional, it's probably best to steer clear of weighing in on how you think they should manage their symptoms and dealing with their condition. I would be a millionnaire now with the amount of times in the past I have been asked by other people 'have you tried this?'. Now the response tends to be yes I have already tried it and if I haven't, there tends to be a good reason for it.  I've had it from friends, family, other patients in hospitals over the years and the infamous Dr Google. Fair enough if you navigate across some info you may think could be useful, I am all giving and totes up to get in on a bit of new research or info that could help. Feel free as a bird to pass it on over. But do it once, don't keep asking if they've tried eating buffalo semen just cause you saw it written in HEAT magazine that one time. I think I can stand up for a few people with invisible disabilities who have been given a lot of unsolicited advice and that does not help deal with it any easier. 

So what can you do to help this point. Well practically speaking, it's most helpful to ask. If they admit feeling like dog shit, don't flutter about them and fret. Just ask a simple what can I do to help? Don't do that typical British thing of whining if it's just a mundane thing of just running a bath or changing bed sheets. Also I would also recommend to not over-romanticise any condition (quite frankly I find it quite sick!), just do as your told. It's the small things that make a difference. Finally, it doesn't feel good to put the person feeling shit in a position where they feel they need to prioritise reassuring you over helping themselves feeling a little better. Yes even Cleopatra-style grape feeding can become tiresome after a while. 

5.It's not just about the condition itself 

Any disability whether invisible or visible, contain multitudes and being aware of those is a crucial part of understanding and supporting a person with one. It is not just about the disability but about the weariness of being in pain all the time (I do love being in pain 24/7, I can't get enough of it!), the sheer lack of sleep and the effort of putting one in front of another. I have found it is a constant balancing act between pain versus needing to try to have a life. It is always having to be great because otherwise people worry or wanting to watch a film in a crampt up cinema chair when in fact your back is on fire and you can't move it a single inch. 

Yes it is hard if you do not inhibit a hidden disability (and I would not wish it on my worse enemy!) to fully understand or empathise with the full extent of severe pain and little difficulties experienced by the person with a invisible disability, I would give one word of advice to remember and it is this: It is not an invisible disability, it is an invisible life. An invisible world. It is about being part of that world where behaving in a supportive manner that does not cross boundaries or make anyone feel like they are not worthy and treated like an idiot. 

6. They are still people, too

This piece of advice that I am about to type out is important to keep in mind. A person with an invisible disability or condition is not a saint or an inhuman being. It's about balance. A person who is feeling a bit crappy can still be a shit sometimes. It is hard to admit sometimes that your 'ill' friend has done something not cool because it can feel or come across like your blaming someone who may not be able to always stand up for themselves. Personally, I do not feel I have this in my case. I will admit if I have done something or own up to mistakes but I will not let anyone walk all over me or treat me like a mug. It's not my style to play a victim or do the poor me act. 

However, I feel that this is as disrespectful to them as disbelieving them. If you are unsure whether something they have done is as a result of how they are feeling or just them being human (making them come across as a little shit sometimes!), maybe just gently mention that you found their behaviour quite difficult and ask whether it is related to how they are feeling. 9 times out of 10 this is the case. Believe me. 

Lastly, I would say people with invisible disabilities do not want to feel excluded or left out of the loop unnecessarily. Just because I couldn't come to a social event and bailed out maybe 2 or 3 times in a row, does not mean I am avoiding the situation. It may have just come at an unlucky time when some symptoms have sky rocketed. I completely get it that it hurts to hear that others did not come for help because they know I may be in pain a lot of the time or generally feel unwell. But I've been dealt with this pack of cards and I can't change this, so I wished when I was younger that people did not see it as changing who I am and what I'm good for. It does not make me less able to help, most of the time. I am a people pleaser and love to do things with others and make memories and experiences but sometimes when I am not able to do these things or help, it is a decision I have to make and live with, not you. Over time you get over the guilt and always learn ways to looking after yourself without having severe FOMO. 

What would you say are your top things you would want to know about hidden disabilities, whether you have one or not?

Love,

T

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