Life with invisible disabilities is a complex picture, from problematic diagnoses to dealing with social stigma. An invisible disability is any illness or condition, mental or physical, that’s not immediate obvious to the eye. A person can “look fine” while being anything but fine, and there’s no “get better soon” for a chronic issue. A lack of understanding, insight and compassion within the public and even the medical realms makes the situation more difficult still. But there are ways we can all help to create change and make the playing field for invisible disabilities just a little more even, because living with such conditions is hard enough as it is.
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Patients With Invisible Disabilities
Touch A Life By Sharing Your Story
Your story is valuable, and sharing it could just make the difference that someone else needs to get a diagnosis, to pursue a new line of treatment or to feel a little less alone in their journey. If you feel comfortable doing so, you might want to consider sharing what you can to with others, and the likes of Facebook groups, forums, magazine articles and blogs are great places to start. If you don’t want to, that’s absolutely fine. You might feel more comfortable with making individual connections with others, where you can be a friend to someone in a similar boat and provide each other with mutual support.
Share Social Media
There’s a reason why so much is “trending” these days. Thanks to social media, even a boring old meme can go viral in a matter of minutes and content can branch out to countless people through a few clicks. You might want to post your thoughts on living with your condition, or share suggestions and tips for someone else to try. You might want to share the latest research or news articles on certain health topics. You could share and retweet an array of invisible disability-related posts, articles and images, spreading the word and provoking thought across the world. Even if it only reaches one other person, it can make a difference. You’re one person in a tribe of other invisible disability warriors, and together we can turn a ripple into a tidal wave.
Speak Up With Suggestions
If you find something lacking after a hospital appointment, with a particular service, product, doctor or procedure, you’re in a unique position to feedback your thoughts. Hopefully, if those people on the receiving end care about their patients or customers, they’ll reflect on your input and changes can be sparked. For instance, you might think that patients would benefit from an information leaflet for a particular condition like fibromyalgia, after finding you received no information after your own diagnosis. Or maybe you have a stoma bag and you’ve been to a coffee shop that has dreadful disabled toilets, so you want to contact the manager to discuss better accessibility. Any constructive feedback can make the difference, making the situation better for you and others into the future.
Speak Up With Concerns
In some cases, you may feel something you’ve experienced is detrimental to patients in some way, and that can be a little more complicated. In the first instance, you may wish to speak to someone in charge, like the hospital manager or a company SEO. For medications and devices, you might want to report it via the Yellow Card scheme. You might need to take a particular matter further, such as by raising a case with the GMC (General Medical Council in the UK) or through taking legal action. It can be daunting and incredibly stressful to challenge an authority or authority figure, but if you believe it’s the right thing to do then it’s worth it.
I’ve had to report a surgeon to the GMC and take legal action; it’s still ongoing and it’s exhausting, but I want changes to be made to prevent another person from going through what I did. I would have regretted not speaking up. You might be able to use a negative experience you’ve had to create some good somewhere down the line.
Let Those Around You In
Not everyone has someone in their lives, or at least not supportive someones. Those that do have friends, family or a partner may still feel alone in their journey or like those around them don’t really “get it”. It could be argued that nobody will really ever “get” what you’re going through unless they’ve experienced it for themselves, but that doesn’t mean they can’t empathise, increase their understanding and be able to support you a little better. Letting that person(s) in will be a test of trust and faith, but it could turn out to be a valuable choice for all involved, bringing you closer together and making the support stronger.
At the end of the day, it’s your choice who you tell about your invisible disabilities and how much you disclose, so do it on your terms and at your own pace. While we want those we love to understand or to try to do or say the things we want, if they’re coming from a place of not really knowing what’s going on, what you actually need or how you feel, then they’ll have nothing to go on. Try to gently help them understand a little better, even if it requires some patience on both sides.
Be Kind To Yourself
We’d probably all like to hope that people would be more mindful of the unseen conditions and be kind, rather than rushing to judgement or behaving out of spite or ignorance. But this kindness needs to start with you, because you are with yourself 24/7 and this self-compassion is both deserved and vital. Ditch the guilt, go easier on yourself, prioritise self-care, ask for help when you need it, say “no” when you need to, stop feeling bad about resting, and try to seek small joys in your days without shame.
#InvisibleDisabilities are not typically immediately obvious to the eye. It’s a unique experience every step of the way ????#InvisibleDisabilitiesWeek #chronicillness #chronicpain #spoonie #Fibromyalgia #MECFS #mentalhealth #stoma #ThursdayThoughts #Disability #Health #healthcare pic.twitter.com/uyixGGSPVc— InvisiblyMe (@invisiblymeblog) October 21, 2021
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Doctors, Surgeons & Specialists Dealing With Patients With Invisibly Disabilities
Think Outside The Box
Not all patients will be textbook examples and not all rules of thumb turn out to be adequate for diagnostic purposes. Instead of just looking at blood test results or scan results, see the wider picture. If there’s a chance there’s more than meets the eye to test results, some confounding variable perhaps, consider it before dismissing the notion there’s something more to uncover. If the patient is a complex case, embrace that rather than putting them into a box or giving up because nothing fits.
Be Patient With Patients
It’s not always easy for patients to explain what they’re going through. It’s not always easy for us to trust either, especially not if we’ve been let down in the past. If someone doesn’t warm to your suggestions or if they’re taking some time to recount their experiences and symptoms, then give them breathing room. Try not to talk over them or push something on them. Allow them the time to explain what’s what.
Mind The Gap
Don’t rush to judgement if there’s a big gap between medical records or the patient you see in front of you for a few brief minutes, and what that person claims they’re experiencing. This applies to anyone assuming a person is coping well or “looks fine” because they can’t “see” any illness, but doctors or other specialists also bring their medical knowledge to bear when making judgements about patients. Making a judgement is an instant thing we do as humans, but we should be aware of the biases and the need for an open mind, as well as an appreciation for what can’t be seen. You’re seeing one snapshot of a patient at one point in time. You’re seeing even less if the appointment is on the telephone. You don’t know how they spend the rest of their days or how they feel outside of that very short appointment.
It’s Not “In Their Head”
Just because you can’t see the symptoms or no red flags illuminate themselves in their test results does not mean the patient isn’t going through what they claim. Furthermore, while there’s no denying that mental and physical issues have a reciprocal interaction, not everything is caused by mental health. Likewise, not every illness or pain condition can be helped by focusing on mental health, recommending CBD or dishing out anti-depressants. This fob-off excuse has sadly been received by many women in particular, which smacks of historically viewing women as hysterical or hormonal. Yes, there are “hypochondriacs” and those that may present with an issue that’s a little more obviously tied to mental health, but those are going to be rare cases.
We mere little women happen to know our bodies and we deserve the same appreciation and consideration as any other patient. Please don’t jump to the mental health angle straight away or stick to it despite what the patient is telling you. Think what it might be like for someone to live in agonising pain every second of every day, or to feel utterly hideous with ill health day in, day out. These are very real experiences with a real cause that deserve compassionate effort for diagnosis and treatment. Please do not underestimate us or patronise us.
There’s No Age Requirement For Illness
Don’t discount a patient’s concerns or pleas for help on the basis of their age. I was told many times in the past that I was too young for there to be anything wrong with me, and the years of delays led to my condition deteriorating markedly. Maybe there are “typical” age groups that experience certain illnesses, but those are generalisations and guidelines. To think that someone is too young for a particular condition is not medical science. There is no age prerequisite for pain, illness and disability.
Acknowledge New Information
Some patients will be more informed than others on matters of health, probably after years of dealing with a chronic condition. Some will have been fobbed off countless times and will have researched various aspects for themselves. If a patient presents you with information or a suggestion, don’t feel like it’s an affront to your years of medical knowledge. We mere patients know our bodies and just because we don’t have a medical degree does not mean we haven’t learned a thing or two of use along the way. Possibly things that you hadn’t even thought of. The patient and doctor could make a better team when they work together.
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Wider Public & Loved Ones
There are various reasons someone may need to use a disabled toilet, or may need to cut a lengthy queue with a “can’t wait” card in the regular toilets. For the former, you might think immediately of someone in a wheelchair, but that’s not all. For example, those with stoma bags can typically use a regular toilet to empty the bag. But if the bag needs to be changed, or they’re urgent to empty it, then it’s a pretty desperate situation. An ostomate needs space for changing the bag, including water nearby and something to put the supplies on. That’s no easy feat in a small regular toilet stall with no surfaces, no tap and barely enough room to turn around.
There will, of course, be the odd ignorant individuals who use disabled toilets because they don’t want to put themselves out waiting if there’s a queue for the regular toilets. You can’t really tell unless they’ve said something like “eff that queue, I’m going in the disabled bog”. But there’s no way of knowing from looking at a person whether they have a genuine need for the disabled toilet if they have an invisible condition. Many of us, including myself with ileostomy stoma bag, are already a nervous wreck having to use the disabled toilet, knowing full well people are probably making judgements. To those in the minority who feel the need to say something spiteful, please avoid making accusatory comments or giving dirty looks because these hurt and shame us more than you can ever know.
Mobility Aids Aren’t Binding
Someone may use a type of support, like a wheelchair or walking stick, making the unseen a little more visible. There are different reasons for their use, like such aids being helpful to manage with pain, poor mobility, balance issues, fatigue, spasms and so on. But a person isn’t wheelchair “bound” or “confined” to a wheelchair, and not everyone that uses an aid has to use it all the time. If you see someone in a wheelchair, for instance, don’t be surprised if they get out and walk around to reach something in the supermarket or stretch their legs on a park bench.
Of course not everyone can do this, but that’s the issue here; people have different conditions and issues to contend with, so preconceptions about mobility aids are not always correct. Just because someone’s carrying their walking stick folded up or gets out of their wheelchair does not mean they’re somehow faking or that they don’t need those devices.
You may not necessarily get what it’s like to live with an invisible disability if you’ve not lived it for yourself, but you can learn a bit more about them. Check out articles, social media and blogs for personal accounts of what it’s like. Keep up with news developments in healthcare, ask questions and share interesting posts on Twitter. I live with invisible conditions but it wasn’t until I experienced more for myself and then got involved online that I started to learn more about countless conditions I previously had no clue about. I gained appreciation for the unique experience every individual has, for the diversity of conditions, treatments, management styles. We can always learn new things and challenge our outdated preconceived notions.
Be Kind, Always
You never know what another person is going through, be it a mental or physical condition, illness or other disability. You also never know whether they’ve got problems at home, issues at work, financial difficulties or whether they’ve lost a loved one. It’s easy to jump the gun and get angry with someone or mock them, but maybe take a moment to think about what you can’t see in instances where that person hasn’t done anything to you. Give the benefit of the doubt and choose to be kind.
There’s No Chronic Illness Template
There’s no one way for those with chronic illness or chronic pain to look or sound. I’ve been told I sound really good on the phone, so much so that’d you never have any idea there was so much wrong with me! While I might look atrocious much of the time, there’s still plenty of times where, if I actually brush my hair and can function to go out or take a photo, that I look “normal”, whatever that means. How does chronic illness look or sound? Like you, like me, like any of us. I wouldn’t want to look as utterly horrific as I feel. I’d give myself nightmares.
We’re Not All The Same
The experience any individual has in life is unique to them. The same goes for those living with a chronic condition. The invisible disability, the illness, the experience of pain and other symptoms, how they deal with it, their mental health, the support they do or don’t receive, how they’ve fared within the healthcare system. Every step is different. Even if two people have fibromyalgia, their experience of it and how they get on day to day will be different. There should be no judgement, no pressure and no comparison.
Be There For Loved Ones
If you have a friend, colleague or loved one with an invisible disability, it can be hard to know what to do or say. A person having a chronic condition can have widespread ramifications for those around them, their families and friends and partners. You want to be there to support them, yet the divide can grow if they feel like you’re not listening or like you don’t care, even if you actually do. I don’t think anyone can really “get” what it’s like to live with a chronic condition unless they’ve experienced it for themselves, but that doesn’t mean you can’t learn a bit more about it and try to understand. Showing that desire to know and to care what their experience is like will go a long way to bridging that divide. Small gestures to show you’re thinking of them will bring a smile to their face. Active listening and just you being there for them, no matter what, can help that person feel connected and less alone.
You never really know what someone else is going through. Choose to be kind ????#InvisibleDisabilitiesWeek #InvisibleDisabilitiesWeek2021 #InvisibleDisabilities #Disability #chronicillness #chronicpain #spoonie #Health #awareness #fibromyalgia #migraine #ostomy #wednesdaythought pic.twitter.com/cd6ZpbEBDS— InvisiblyMe (@invisiblymeblog) October 20, 2021
This post isn’t meant to insult, tell people off or push ideas onto anyone. These are just my personal thoughts, reminders and suggestions.
I’d love to know what you think of these. Do you have any other suggestions or reminders for patients, the public or medical professionals when it comes to invisible disabilities?