Home General Info & Awareness Invisible Disabilities : How Docs, Patients & Public Can Help

Invisible Disabilities : How Docs, Patients & Public Can Help

by InvisiblyMe
A watercolour image with multicoloured paint all around to show a woman's face looking rather sad. Below is the post title : Invisible Disabilities : How Doctors, Patients & Public Can Help.

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.

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. 

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.

Wider Public & Loved Ones

Toilet Troubles

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. 

Read Up

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. 

This post isn’t meant to insult, tell people off or push ideas onto anyone. These are just my personal thoughts, reminders and suggestions.

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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?

Caz  ♥

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29 comments

Sandee October 22, 2021 - 4:53 pm

Often disabilities are not apparent. I always keep that in mind. Great advice here.

Have a fabulous day and weekend, Caz. Big hug. ♥

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InvisiblyMe October 25, 2021 - 4:54 pm

I’m glad you like the post, and it’s great you keep in mind disabilities generally. Thanks for the comment, Sandee – have yourself a lovely week! ???? x

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Ashley L. Peterson October 22, 2021 - 5:19 pm

Great tips! I think someone needs to come up with an app that reaches out and smacks a doctor any time they say (or even think about saying) it’s all in a patient’s head.

I saw your post on Instagram about this blog post, which is a good thing, because WP didn’t show it to me in my feed yesterday.

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InvisiblyMe October 27, 2021 - 4:57 pm

I’m glad I posted this to Insta in that case! I’ve had the problem you have with odd posts not coming up in the Reader in chronological order. It’s bizarre.

If only I knew how to make an app then I’d patent that idea straight away. We’d make billions ????

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capost2k October 22, 2021 - 5:44 pm

Actually, Caz, I hope you do not get angry with me, but I often use a handicapped stall in the men’s room if it is available, but only after assessing if it is likely to be needed by someone who really NEEDS it.
Once in a long queue for a concert, a bunch of women were standing outside the two doors, one marked with a woman’s figure, the other with a wheelchair. As I passed, a youngish woman walked past the queue and went into the handicapped restroom. You’d have thought she had an abortion, the anger of the women standing in the queue!
It just seemed sensible as long as no one needed the handicapped restroom to go ahead and use it, and if someone handicapped approached, give them first place. For that matter, who knows? Based on your blog, she MAY HAVE needed it!
Thanx for your thoughtful blogs and educating us on Invisible Disabilities.
❤️&????, c.a.

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InvisiblyMe October 27, 2021 - 10:44 pm

There’s often outrage at someone going into the disabled loo if there’s a queue for regular toilets – sometimes the outrage is warranted, but other times it not and it’s unlikely you’d really know unless that person said something or behaved in such a way as to indicate that they simply couldn’t be bothered to wait their turn.

I see your point, and of course I wouldn’t be angry at you for that! I imagine many have done it. If nobody else is there, and you won’t be in long just in case someone needs that disabled toilet, then it’s not all that outrageous. It’s just good to be mindful and polite, like you wouldn’t stomp out of a queue and push into the disabled loo. That’s just not you, obviously. It’s only a small minority that would do something like that – and likewise it would hopefully be a minority that would call out someone to insult them for using a disabled toilet because they’ve assumed they’re able-bodied.

Thank you very much for reading and for the thoughtful reply! ????

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Terri, Reclaiming Hope October 22, 2021 - 9:42 pm

Another outstanding post Caz! You provide some really excellent suggestions for us all. I think your most important pieces of advice were not to rush to judgment and to be kind. As you said, we can’t ever know exactly what someone else is going through. Why should we add to their misery by being unkind or trying to make them feel worse about what’s going on with them? Sending lots of love and hugs your way!!

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InvisiblyMe October 27, 2021 - 11:26 pm

Exactly, I think that’s a really important issue, too. Don’t rush to judgement, even if it comes naturally to. It’s good to keep an open mind, to think first and consider that other person. Many people will, but there’ll always be someone keen to say something insulting or make a face without realising the impact that can have.

Thank you for the comment lovely – I hope you’re keeping as well as possible my friend ???? xx

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James Viscosi October 24, 2021 - 4:36 pm

This is a great series of lists of what people, patients, and providers can do to raise awareness of invisible disabilities, and you embody many of them on this blog! I try to do my part with my posts about cerebral aneurysms, which is a condition where almost no one who has it knows they do, until it’s too late; although such aneurysms aren’t themselves typically a disability, they sure can cause multiple disabilities if they rupture.

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InvisiblyMe October 28, 2021 - 9:02 am

I think what you do to raise awareness & share your experience is absolutely fantastic, James. I knew of cerebral aneurysms but little else, like how they present, what happens if they happen etc. I’ve learned a lot from you, and I’m certainly not the only one.

This is part of why I don’t like just saying “disability” and try to put something like “health conditions, chronic illness and other disability” because you wouldn’t necessarily explain or classify something as “chronic illness” but it can be seen as a disability, and likewise something like an aneurysm you might not think of as a disability in itself but a “condition” (which of course can have long term consequences depending on the situation).

Thank you for sharing this and for all you do – you certainly take The Event and bring goodness from it through your writing, so you should be proud of that. ???? xx

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Despite Pain October 25, 2021 - 1:51 pm

What an excellent post, Caz. You’ve covered everything – things we can do to help ourselves, things other people could do and things people just should not do – judge. It’s awful that there are so many judgemental people out there who are ready to judge someone for parking in a disabled space or for going to the disabled toilet. We all live with enough problems. Facing judgements is something that we shouldn’t have to deal with.

Your “It’s not in their head” section was spot on. I think this is the reason we need to speak up and learn how to advocate for ourselves.

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InvisiblyMe October 28, 2021 - 9:45 am

You’re absolutely right, Liz. Facing judgement is something those with health conditions and other disabilities don’t need on top of everything else. I’d like to hope there are more compassionate & empathetic people than not, or that the judgemental ones mostly keep it to themselves, but you’ll always get someone eager to provide an insulting comment or dirty look.

Advocating for ourselves is so important, even though it shouldn’t be. I personally found it had to come with time, with practice, with enough anger that I overcame some of the shyness and reluctance to challenge the “authority” of medical professionals. But it’s still not easy now, and it makes me wonder just how many people are suffering or unable to get the help they need because of the ignorance in those treating them and they’re unable to advocate for themselves to rectify it. Even then, you can only do so much. There needs to be more radical change within the profession as a whole.

Thank you for reading and for such a thought-provoking comment ????

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wanderingmattlarson October 25, 2021 - 3:01 pm

Hope doctors read this!

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InvisiblyMe October 27, 2021 - 10:46 pm

What a difference it would make if the medical profession could see what patients actually have to offer in terms of feedback. It would save the healthcare system a lot of time and money, it would save lives, and it would prevent people from suffering more as a result of ignorance or judgement. It does make me wonder why healthcare systems never seem to consider getting patient views and actually listening to them. Boggles the mind.

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Lucy October 26, 2021 - 8:43 pm

This is such a great post Caz, thank you! I wish I could print it out and hand it to every doctor, especially the all in your head comment! Patients so often all get lumped together and given the same treatment, but like you said we’re all unique – even people with the same conditions experience different severity of symptoms and it impacts them in a different way. We all definitely need the reminder to be kinder to ourselves 🙂 xx

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InvisiblyMe October 28, 2021 - 8:33 am

I know, right? I think if doctors, nurses, surgeons & specialists were to see feedback from patients like this (though I’m sure someone else could write it far better than I) then things would improve drastically for both healthcare services and patients alike.

Thanks for the great comment, Lucy ????

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forresting365 October 27, 2021 - 1:48 am

This is wonderful, Caz, and so very thorough. It’s very educational….I always learn a lot from You and it’s always nice to be reminded about things others may be going through. I also applaud that You had the courage to report the surgeon to the GMC. Wishing You the best of luck with that and that You are heard and appropriate action is taken to rectify the situation. No doubt that will help someone down the road avoid what You went through. Sending You huge hugs!!!! Thank You! ????????????

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InvisiblyMe October 28, 2021 - 8:39 am

Aww thank you, Katy – I’m glad you liked the post. I feel doubtful on the GMC and legal action, but at least I can say I’ve tried either way and I won’t give up. I really appreciate your support and the fab comments you leave, you’re the best. I hope you have a great rest of your week lovely! ????????????

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Carrie Kellenberger October 27, 2021 - 8:07 am

Wonderful post, Caz. We all need to be working together to raise awareness and to move things forward for those of us who suffer from invisible disabilities. I see change coming! Keep on advocating. I love your work.

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InvisiblyMe October 28, 2021 - 8:41 am

Thank you, Carrie – right back at’cha! You’re absolutely right, we need to keep fighting and all of our individual efforts are part of a bigger whole. We’ll make the difference ???? xx

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joarosetintedworld October 27, 2021 - 11:34 am

Great post Caz. The overall message that I take from this and that I always try to remember is to have some empathy for others. Just because they look fine doesn’t mean that people aren’t struggling. Everyone has their crosses to bear, and it is important to just try and understand that. Doesn’t mean it always happens, but we can hope, right?

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InvisiblyMe October 28, 2021 - 8:44 am

Absolutely, I think that’s an underlying thing with all of this, isn’t it? Empathy. A little more empathy and compassion could go a long way, and that’s not just for invisible disabilities but anything a person might be going through. We can definitely hope for that. Thanks for the great comment, Jo! xx

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Carolyn Page November 2, 2021 - 7:45 am

Caz, I love that you’ve written a segment for the ‘health carers’. Many do not understand the needs of the sick – it is truly ironic to say! However, they too are just humans with limitations. They too require education.
Well done to you…
xoxoxo

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InvisiblyMe November 16, 2021 - 6:12 pm

You’re absolutely right. Sometimes people genuinely care and want to help, but aren’t sure what to do or say, or they’re afraid of putting their foot in it. Sometimes people don’t even realise they should do or say things differently to better support their friend, partner or loved one. It’s all a learning curve.

I’m glad you like the post. Thanks for the comment, Carolyn ???? xx

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Lisa November 7, 2021 - 9:40 pm

Wow is all I can say. Your post has left me in tears. I have suffered from invisible conditions for a lot years. Over the year though the wheels have fallen off to the extreme. I still suffer from invisible diseases but the number has quadrupled. I think the suggestion of hanging on to my voice an using it is important. Social media also sounds like a great outlet.

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InvisiblyMe November 16, 2021 - 6:15 pm

I’m really sorry to have made you cry, Lisa – certainly wasn’t my intention! I’m hoping this post could make you feel a tiny bit less alone and maybe even a tiny bit more empowered to use your voice. Like you, I’ve found that things have just snowballed as time has gone on, with conditions multiplying and my ability to handle them becoming more questionable. It’s exhausting and disheartening, and we can end up feeling so powerless.

I do think that any way in which we can get some good from the situation or find ourselves a new sense of purpose is worth exploring. I’m always around if ever you want to talk, just so you know ???? xx

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The Back Garden Naturalist November 16, 2021 - 2:59 pm

Hi, I’m so pleased I’ve found your blog! Great post & it’s comforting to know we’re not alone with chronic health issues & lets hope in time people (including health professionals) can become more understanding or at least less judgmental. Thanks again & I look forward to reading more. 🙂

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InvisiblyMe November 16, 2021 - 6:18 pm

I’m glad you’ve found my blog so I could start following yours, so thank you very much for commenting. It’s hard to imagine life with chronic illness and the struggles we face, including within healthcare, and not having the online world for information, for support or as an outlet. It connects us, too, helping us feel a tad less alone in what we’re going through.

We have to hope that, in time, there’s a little less judgement and stigma, and a little more compassion and understanding. That really should start with the medical professionals who get to dictate whether patients actually get the tests, diagnoses, treatment and support they need or not. xx

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Change Therapy April 6, 2022 - 10:42 pm

Hidden disabilities is a tough subject, and to find a wonderful place here where it is open to discuss, is just brilliant. Thank you

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