Why It’s Important To Speak Out : Invisible Disabilities Week 2019

That’s right, another awareness week. But this one is close to my heart, and reflects why I started this blog – InvisiblyMe – which was borne from my experience with chronic invisible illness. You can find out more about Invisible Disabilities Week on the Invisible Disabilities Association website here.

As I write this, I’m in agony & I’m exhausted to my bones. While my brain is foggy, it’s a little better than this morning so I’m taking the time while I can to put something down in writing. To look at me, you’d say I look fine. And therein lies the crux of invisible conditions.

A few examples of what I deal with: stoma (ileostomy with colectomy), chronic pain, fibromyalgia, osteopenia, chronic fatigue, immune system issues & various deficiencies, specific localised pain from nerve damage, chronic migraines, anxiety, urinary issues, bronchiectasis, Raynaud’s & erythromelalgia, Pernicious anaemia, and so on.

Stomas – The Visible But Invisible Condition. What you don’t see are the problems I’ve had with the stoma, the challenges it throws up, the affect it can have on confidence and mental health. You can’t ‘see’ any of the other conditions or chronic pain.

A photo of me with shorter hair, holding my top up slightly to reveal y stoma bag.
Now You See It

Sick Enough Yet?

A photo of me lying in a hospital bed, poorly and with bits and bobs stuck on me.
Sick Enough Yet?

Put On A Smile, Brush Your Hair, And You Look Fine.

A photo of me sat on the grass outside, wearing sunglasses in the nicer weather, weather a leather jacket and jeans.
But You Don’t Look Sick

I can still say I’m very lucky; I have a lot to appreciate and there are ‘lots of people who are far worse off than I am’. While standing back and getting perspective can be beneficial, comparing what you’re going through often has the opposite effect, leading you to feeling guilty, awful that you don’t cope as well as you think you should, ungrateful when you’ve been feeling down. Every one of us has our own unique experience. It can’t be compared.

What Are Invisible Illnesses/Disabilities?

Chronic, as opposed to acute, is a long-term deal. It’s ongoing, it’s not something one ‘gets over’ like a cold. They are conditions that are managed on a long term, ongoing basis. Such invisible, chronic illnesses can range from mild to severe, as can their impact on your quality of life. Symptoms may pose a little or large amount of pressure on your day to day living, being minimally or extremely debilitating.

There are countless conditions that would be classed as invisible, both mental and physical. While the focus is often on physical, it’s worth noting that for many there’s significant interplay between the two. Invisible conditions include the likes of … Autoimmune Disorders / MS / Diabetes / EDS / Sleep Disorders / Digestive Conditions such as constipation, Crohn’s or Colitis / Pernicious Anaemia / Hyper or hypothyroidism / POTS / Trigeminal Neuralgia / Lupus / Chronic Fatigue / Migraine / Depression & Mental Illness / Sjogren’s Syndrome / Arthritis / Intolerances & Allergies / Lyme Disease. The list goes on. And on. And on some more! Many people are greedy and have numerous conditions & associated symptoms to deal with.

How those with invisible illness feel in terms of symptoms can be highly variable even from hour to hour, let alone day to day. And that’s before counting flares.

A blue rose in the background, with text on the front reading : "But You Don't Look Sick. Looks can be deceiving, and smiles can hide a world of pain", followed by InvisiblyMe at the bottom.

Problems With Invisible Illnesses / Disabilities

  • Fear of embarrassment. Stigma, judgement, being labelled melodramatic or a hypochondriac. With this can also come guilt and feeling like a fraud when we ‘don’t look sick’.
  • Unsolicited ‘advice’ or unwelcome, misplaced comments, whether well meaning or not.
  • ‘Get well soon’, where there is no ‘getting well’ and getting ‘over’ a chronic condition.
  • Difficulty with accessing accessibility. I’ve had snide remarks when using a disabled toilet to deal with my stoma bag. I’ve been told to let the lady behind me, who’d just joined the queue with a walking stick for the disabled loo, to go first because I clearly didn’t have anything wrong with me. On days when I’m about ready to fall over, I have to stand on busy buses, nobody would give up their seat for a clearly healthy person (it’s a bit different if I’m using a walking stick because suddenly illness is made a little more visible).
  • Those around you probably think you’re a picture of health, or simply that you ‘look fine’, because you can’t see what’s physically going on inside someone’s body or the pain they feel.
  • Resentment and frustration for various reasons, from there being no ‘cure’ and missing our old lives and who we once were, to frustrations over others not understanding or ‘getting it’.
  • Guilt, for feeling like we’re a burden or for letting people down.
  • Planning can be very tricky given the changing nature and intensity of symptoms and flares. This can have a knock on effect beyond the obvious, impacting the likes of relationships, interests and social lives, and even our confidence.
  • Invisible illnesses can be very hard to treat and manage, but often harder still to diagnose. There can be significant overlap in symptoms of different conditions, with no straightforward reliable test. This is the case with things like ME/CFS and fibromyalgia, and can be the case even with various autoimmune conditions.
  • It can be disheartening searching for answers, and a nightmare going to different doctors and specialists. As is often the case, invisible conditions can take years to be diagnosed, with patients regularly fobbed off or misdiagnosed. It can be a fight to be heard, to be believed and to be taken seriously.
  • This list can go on for longer than the Brexit negotiations, so I’ll leave it there.

The Impact

Chronic, invisible illnesses can have a marked impact on any and every aspect of life, from employment and day to day activities, to relationships, social lives and mental health. Living with such conditions can be isolating, frustrating and incredibly disheartening, which is why awareness and support are so vital.

It can affect those around us, like friends and family who find it hard to see us unwell. It can affect our social lives, when we’re not able to meet up or have to cancel at the last minute because of our health, and then friends often eventually stop asking. Other ‘friends’ decide we’re too much hassle & negativity, and move on, leaving you behind. We can feel left behind in life, too. What we thought our lives would look like by this point is typically nowhere near the reality. Interests, travel, hobbies and all the things we used to do or enjoy are either limited or go out the window.

When our lives get shattered by chronic invisible illness/disability, it’s then a careful, painstaking process of putting the pieces back together. Working through stages of anger, denial, resentment and grief, and trying to come to a degree of acceptance. Working to put meaning back into our lives, to prioritise, to learn to pace, to find ways around the challenges, to reinvent ourselves and our lives so as to adapt to the current reality of the foreseeable future.

To Speak Out or To Not Speak Out

A blue and white image from the Invisible Disabilities Week website showing the dates for 2019's awareness week.

It’s the fear of embarrassment and judgement, and being discouraged because people will still not understand, that makes invisible illness so difficult to discuss.

Invisible illnesses come in all different shapes and sizes. Despite more people talking out about their conditions, many can still cause embarrassment, like bowel problems, sexual symptoms, pelvic floor dysfunctions, incontinence, or stomas. It can feel humiliating to tell someone about such things, let alone go in to any detail in order to have someone understand the problems you’re experiencing. It’s not enough just to say ‘I have an autoimmune disease’ or ‘I have bowel problems’, because that can never begin to describe what you’re going through. And sometimes, we just want someone to acknowledge what we’re experiencing, because going it alone can be a very lonely place.

To try to get someone to appreciate what you’re going through means sharing the nitty gritty details, the personal things you don’t want to talk about for fear of being looked at differently, for feeling embarrassed or ashamed. No matter how compassionate the other person, I don’t think anyone can really ever fully appreciate your experience because it’s unique to you and only you live it, day in, day out.

Whether and what you choose to share with others, including who you tell both offline and online, is up to you. It’s a personal decision. There should be no judgement. I don’t think anyone should be judged for keeping things to themselves, just like I don’t think someone should be criticised for talking out and being open about what they’re going through. The old adage of ‘if you have nothing kind to say, say nothing at all’ comes to mind.

There is still a lot of stigma, judgement, prejudice, misunderstanding and ignorance around invisible illnesses and disabilities. There’s still a lot of embarrassment, shame and feelings of guilt and self-consciousness. There are still far too many people feeling lonely and isolated with and by their illnesses/disabilities.

an image with a black background and red rose, with the text "your illness may be invisible. You are not" on the front, followed by InvisiblyMe at the bottom.

I strongly feel that a little more awareness, understanding & compassion can go a long way, and speaking out can achieve several things.

Talking about invisible conditions and our experiences can achieve a lot of things. It may make people think twice before judging someone who ‘looks fine’. It can help those who are suffering with chronic invisible illnesses to write about their experiences and express what they’re going through, to get support from others and/or to give support to those who read or listen. It can help in showing others they’re not alone and give them the confidence in reaching out and getting support themselves.

It can also be a force for real positive change, in our collective way of thinking and in how things are done. It can be big and small, from signs on toilet doors saying ‘not all disabilities are visible’, to changes to the benefits system or more flexible working options for those with such conditions.

If you are dealing with invisible, chronic illness/disability, please know you are not alone. You don’t have to suffer in silence. The online world can be a haven, where you can find your tribe of others going through their own invisible struggles. We see you.

Keep talking, keep respecting the choices & opinions of others. Keep spreading the love & support. Keep bringing awareness & showing that there’s more than what meets the eye where invisible illnesses and disabilities are concerned.

Caz  ♥

Follow:
Share:

70 Comments

  1. October 17, 2019 / 4:31 pm

    I totally get where you’re coming from. I suffer from ADHD, OCD, depression & anxiety. And people say the same thing when I’m in agony: you look fine. Or cheer up. If only they knew.

    • October 17, 2019 / 9:01 pm

      I hate that one “cheer up.” I have had “chin up” too.

    • October 18, 2019 / 3:34 pm

      I’m sorry you know all too well what it’s like. Those kinds of comments can actually be pretty insulting and make us feel worse than we already do! Thank you for sharing x

  2. October 17, 2019 / 4:44 pm

    A great post to promote awareness. It’s very difficult for all sufferers and you are a very persuasive advocate. You hear awful stories of people on the end of aggression due to the stupidity and lack of awareness of others.

    • October 18, 2019 / 4:11 pm

      Good point, it can put people on the end of aggression because of lack of awareness. Thank you so much for the comment, it’s much appreciated. I hope you all have a lovely weekend.x

  3. October 17, 2019 / 5:01 pm

    Thanks for letting me know Caz!
    Sending good Karma your way with lots of soft hugs.
    XO

    • October 18, 2019 / 4:12 pm

      Aww that’s so kind of you, Melinda. Thank you! Hugs back at you, I hope you have a restful weekend  ♥ xx

  4. October 17, 2019 / 5:01 pm

    I hear you and I too would like more awareness around Invisible Illnesses. I have Transverse Myelitis which is similar to MS and to see me some days, you’d think I was okay too. But people can’t see the pain, the variety of symptoms or the angst, depression, the embarrassment or the fear of the unknown. Thank you for this post and I swallowed the lump in my throat when you said: “know you are not alone.”

    • October 18, 2019 / 4:15 pm

      I’m sorry you’re dealing with your own invisible battles, Carol. You’re right, others can’t see the embarrassment, the fear of the unknown (an excellent point), the depression, or the myriad of other things that are going on underneath the surface. Thank you for sharing 🌷 xx

  5. October 17, 2019 / 5:07 pm

    What an excellent article!!! You’ve really hit the nail on the head about the complexities of Invisible Illness – the emotions that go with having one, the dealing with people who don’t understand and more.

    When it comes to using the handicapped washroom, if someone is going to use it right before me, I now ask them “do you really need the handicapped stall? I need the grab bars, so if you’re able to use a regular stall, I’d appreciate it.” Most of the time, the person is quite apologetic. If they say yes, they do, then that’s fine and I don’t question them. I don’t know if doing this is a good thing or not, but it makes me feel better to challenge people who use it just because it’s bigger. My only pet peeve is when they put the baby changing station INSIDE the handicap stall…so annoying!!!!

    thanks for sharing from the heart my friend…you’re doing a fabulous job of spreading awareness about chronic health and invisible illness and I for one appreciate it!! oxoxox

    • October 18, 2019 / 4:21 pm

      Aww, I’m glad you liked the post and thank you for sharing. People can react quite differently with the disabled toilet issue. When there are queues in the regular loos, a lot of people head for the disabled one, which isn’t helpful for those who actually need it for things like the grab bars or for the immediacy of it (incontinence, for instance, or a stoma bag leak). I think you do amazingly with being assertive and asking, very politely, whether those in front of you need it at that time. This is such an amazing comment, thank you, Pamela!xx

  6. October 17, 2019 / 5:07 pm

    Another great post Caz. Thank you. I’m sorry to hear you were in pain as you typed this post, and hope you feel better soon. 😉 you know me by now! Seriously, hope it lifts a little if not alot for you. You’re such an amazing individual and offer such support to everyone and you deserve a little break every now and then – esp if we are going to meet up any time soon! speak soon lovely.xx

    • October 18, 2019 / 4:33 pm

      Hope you feel better soon too with your MS symptoms – cheer up, it can’t be that bad 😉 Honestly, these sorts of things can be so damaging can’t they?! Thanks for the lovely comment, Toni, it’s very much appreciated!  ♥ ♥

  7. October 17, 2019 / 5:41 pm

    It’s good to explain because people can’t understand if it hasn’t happened to them. Of course it’s not easy to get the whole picture across because people will say ‘my friend’s got irritable bowel’ without taking in properly your devastating conditions. The internet has been excellent in informing those of us it hasn’t happened to, Fybromyalgia for example was a mystery. Carry on sharing and hopefully getting support Caz.

    • October 18, 2019 / 4:36 pm

      That’s so true, you can’t get it all across but explaining can help and keeping ourselves open to know information is always good. The internet really is fantastic for this kind of thing. Thank you, Janet! I hope you have a lovely weekend ahead 🌷 xx

  8. October 17, 2019 / 6:43 pm

    You’re so right, we have to keep raising awareness about invisible illnesses and, yes, there are so many of them. I’ve never heard anyone say to me, ‘you shouldn’t be parking in that disabled space’, but I’ve often heard people say it about others. I’m always quick to jump to their defence because how does anyone know what they’re dealing with? Hopefully, I’ve said enough to make people think a little bit more. It is difficult enough living with an invisible health condition without being questioned about it.

    • October 18, 2019 / 4:44 pm

      I probably would be more sceptical of people too if it weren’t for having these experiences myself and having ‘invisible conditions’, along with knowing lots of others like yourself online to get more of an understanding of the breadth of conditions and symptoms. I’m quick to jump to the defence of someone else too and consider the other point of view. As you say, it’s hard enough to deal with it let alone to cop criticism or questions or judgement. Thank you for sharing your thoughts, Liz  ♥ xx

  9. Ashley
    October 17, 2019 / 7:26 pm

    It’s too bad more people don’t realize that giving advice, no matter how well-meaning, is the opposite of helpful.

    • October 19, 2019 / 4:06 pm

      Exactly, it can be insulting, offence and hurtful sometimes. x

  10. Michelle Tikalsky
    October 17, 2019 / 7:34 pm

    It is extremely difficult to know what anyone is going through just by looking at them. I had no idea what you dealt with daily until reading this. Thank you for sharing your story. I hope you get better.

    • October 19, 2019 / 4:09 pm

      I guess it’s quite similar to not knowing what’s going on in someone’s personal life, with their relationships or money or job worries. Thank you, Michelle  ♥ I hope you’re having a restful weekend.xx

  11. October 17, 2019 / 7:55 pm

    Thank you for sharing this, Caz. I agree about the assumption that just because someone thinks you look fine, doesn’t mean you are. Also there’s lots of people that just made it bad for others that really do have chronic illnesses, these are the ones that lie and commit insurance and medical fraud.

    • October 19, 2019 / 4:24 pm

      That’s such a good point and it’s frustrating because that’s where the stereotypes and disbelief comes in – the minority ruin it for the majority then where all the fraud comes into play. Thank you for the comment, Alice! I hope you have a lovely weekend xx

  12. October 17, 2019 / 8:38 pm

    Oh wow, this is such a great post and you’ve explained everyting that I’ve had issues with when it comes to invisible chronic illness. I’ve had problems both with mental health and type 1 diabetic related problems for years including fatigue from it. I’ve been lucky to be around people who are a bit more understanding recently but the worst part of the invisible disabilities is just that lack of knowledge and understanding even when you do try to explain to people what you’re struggling with. this happened to me at my secondary school, and for most of my teens my teachers actually didn’t believe there was anything wrong with me. After coming back from a three week sickness where I was off school as I also had asthmatic problems that left me unable to go up a flight of stairs, my teacher took me aside and started complaining how much school I’d missed and said ‘there’s nothing really wrong with you’. She compared me to another girl who was ‘really sick’ and I remember wanting to cry when that happened.

    Obviously I’m in a better place and that doesn’t affect me now in the same way and I’d brush off that remark today, it’s an example of how people still view invisible conditions and it’s in a way worse than somethign visible, because people can see and sympathise or at least be understanding of people with a physical disability, but something invisible affects you inside and you struggle to cope every day. It’s also hard to explain, sometimes, just what is wrong to people as they sometimes think you’re just over-exaggerating.

    This was a brilliant post. I feel bad that I didn’t know about this week, it’s definitely something I’ll keep in mind for next year. 🙂

    • October 20, 2019 / 10:39 am

      I’m sorry you know what it’s like to have such invisible conditions, too. You’re right about it being tough even when you do your best to explain. The teachers you had sound incredibly ignorant and that’s the kind of experience that can leave long term scars. You never should have had to go through that. I find it difficult to explain without feeling like I’m then being judged for being melodramatic, so it’s a bit of a catch-22. Thank you so much for sharing and I’m really glad you liked the post. Thank you lovely  ♥

  13. October 17, 2019 / 8:57 pm

    You know I’m feeling this post hard.
    I’m also loving you rocking your stoma.

    • October 20, 2019 / 10:39 am

      Aww thanks, Jay!! 😄xx

  14. October 17, 2019 / 9:05 pm

    More awareness of invisible disabilities certainly need to be raised. Thank you for sharing and raising your experiences and reminding people about theveffects of invisible disabilities.

    • October 20, 2019 / 10:45 am

      I’m glad you agree, and I think every little helps so hopefully things will continue to improve even if every so slowly and gradually. Thanks, Liz – I hope you’re having a restful weekend 😊 xx

  15. October 18, 2019 / 12:17 pm

    Another great post, Caz 🙂 An important one and obviously written at a difficult time for you. Do take care and remember yourself as well as others ❤️️

    • October 20, 2019 / 12:04 pm

      Such a kind comment – thank you so much, Sandra. I hope the week ahead is a good one for you  ♥ xx

  16. October 18, 2019 / 12:53 pm

    This is such an important post, Caz. Once again you are rising above your own infirmities, which clearly give you little peace—to help others. That is extraordinary, and your drive to work even when it’s so difficult is inspirational. I always learn from you.

    The comment about parking spaces made me look within myself. Though I never say anything to seemingly healthy people using dedicated spots, I shall rid myself of my righteous indignation. And I agree that bathroom stalls should be marked as suggested.

    Would you consider adapting this post for publication as an OpEd in a prominent newspaper? I think it would be a service to all if it gains a wider audience.

    I hope you pamper yourself as best you can.

    All good wishes,
    Annie xx

    • October 20, 2019 / 12:08 pm

      Oh Annie, this is so lovely of you to say, thank you! 🌷Honestly, you don’t know how much comments like this mean and how grateful I am for the words of support. I’m so glad you liked the post and that it was also a little thought-provoking. I think that ‘righteous indignation’ is very natural, I still get it too! But now I think twice afterwards and consider what may not be seen (of course, there are plenty of people who abuse the system when it comes to things like disabled parking, so some times that indignation is warranted anyway!) I’ve never thought my writing good enough to share in a newspaper or other publication. I’m pretty amazed you think it would – I’ll have to give this some thought, see if there are any media outlets that would be open to sharing it to raise a little more awareness on a larger scale.
      Thank you again, Annie – Much love to you, and I hope you’re having a relaxing weekend  ♥

  17. October 18, 2019 / 1:48 pm

    What a fantastic post. I’m on the side of being open and honest. We can’t afford to be wall flowers about this. The only thing that truly changes behavior and beliefs is exposure to the “otherness” people fear, which is what we become when we have chronic illness. Much like race, sexuality or any other way we create these ridiculous divisions, we can break down barriers by fostering good communications. Thanks for sharing your life so openly with us and doing your part to raise awareness. P.s. I’m so glad I’ve finally got your site back! I was really starting to worry, but it finally showed right up this morning. 🎉🎉

    • October 20, 2019 / 12:23 pm

      I contacted my host provider and it seems to be some firewall that’s blocking a couple of people but they’ve said it’s been resolved now – fingers crossed! You’re absolutely right about that ‘otherness’, the fear of the unknown and those divisions and how we need to keep breaking down the barriers with these kinds of conversations. Every little helps, so hopefully in the not too distant future we can look back at this time and say things have improved, even just a little, with collective consciousness and practical aspects in our society of such invisible conditions. Such a powerful comment, Michelle, thank you! 😊 xx

  18. October 18, 2019 / 1:56 pm

    Thank you Caz. You have raised some very important points that help to increase public awareness.

    • October 20, 2019 / 12:24 pm

      I’m glad you felt the points important, it’s hard not to go off on a lengthy discussion about it all so I attempted to keep it somewhat concise! 😉 Thanks, Brigid – have a lovely week ahead xx

  19. James P. Manganiello
    October 18, 2019 / 2:18 pm

    I can relate. I lived with epilepsy for thirty-four years. The seizure were infrequent. But I had no memory of them. Absenteeism. So many people still live with and struggle with epilepsy every day. Some can’t work, some can’t drive. But they keep pushing forward. Im so glad you posted this blog. It really hits home for me. I’m not an epileptic anymore. Been medicine free three years. If there’s a way our stories and experiences can inspire someone else still going through it, count me in. 🙂

    • October 20, 2019 / 1:36 pm

      Epilepsy is something I have no personal experience of but it’s something I’ve always thought has been undercovered by the likes of media because it must have a huge effect on lives, and it sounds very scary and quite dangerous. Did your epilepsy gradually decrease in seizure frequency, or did it seem to stop from something you can pinpoint? It’s great to hear you don’t have the episodes anymore and are medication-free, and it’s great you’re able to share a bit of your story too to help raise awareness and support those going through similar. Thank you for the wonderful comment, James! x

  20. October 18, 2019 / 3:12 pm

    Great post! Thank you for speaking out. I shared this post, because it says it all, and says it well. HUGS

    • October 20, 2019 / 1:39 pm

      I’m glad you liked the post & thank you for sharing it. Thank you also for the lovely comment, Marian! I hope you have a lovely week ahead  ♥ xx

  21. October 19, 2019 / 12:58 am

    Thank you, Caz, for writing articles like this, and for promoting awareness. I’ve learned so much. Thank you for speaking out. xo

    • October 20, 2019 / 1:39 pm

      And thank YOU so more for reading & commenting & showing such support, it’s much appreciated!! 🌷 xx

  22. mark kent
    October 19, 2019 / 8:54 am

    i find most peoples views/judgements about disability very Snotty Nosed .i am disabled . have m.e .. long list health issues .ibs .migraines
    BOTH bladder and bowel problems .I AM NOT AFRAID TOO SAY OR TALK ABOUT THEM list goes on .i take part in a lot lot research

    • October 20, 2019 / 1:42 pm

      I’m sorry you’ve got across a lot of less than positive views and judgements. A lot of people can be incredibly compassionate and open-minded and thoughtful, but sadly a lot can be quite the opposite, too. It’s great you’re willing to open up those conversations and be involved in research – keep fighting the good fight, Mark! 😊

  23. October 20, 2019 / 12:42 pm

    This post is amazing, thank you for sharing your experience with us, you have certainly taught me alot! you are super strong and courageous to stand up for this!

    • October 20, 2019 / 1:43 pm

      Aww thank you! I don’t know about being strong or courageous, but if anything I write can be thought-provoking or introduce someone to something new to consider then I’m happy with that! Have a good week ahead lovely  ♥ xx

  24. October 20, 2019 / 4:24 pm

    i’m grateful for your advice, Caz!
    may you continue successfully
    find ways to be well
    and sharing 🙂

    • October 21, 2019 / 3:27 pm

      Aww thank you lovely  ♥ I hope the week ahead is kind to you.x

  25. October 20, 2019 / 5:09 pm

    Charlee: “It sure must be difficult to have people think and act like you are fine or making things up, like in the line for the bathroom.”
    Chaplin: “And then maybe even expecting you to defend yourself, as if you owe them some sort of explanation.”
    Lulu: “We admire you for writing about your experiences and we hope it helps people understand that they shouldn’t jump to judgments about people they don’t even know.”

    • October 21, 2019 / 3:29 pm

      Chaplin, that’s right, and I often feel I owe an explanation when really, none of us should feel that way. Thank you guys, your comments mean a lot – Be careful on that flying coaster adventure of yours!! xx

  26. October 20, 2019 / 6:46 pm

    It’s tough to have something that most people don’t have any experience with. Most of us have experience with things like cancer — if not ourselves than a family member or a close friend has had it. With “invisible illnesses”, we may have a friend who has it but we may not even know if they choose not to talk about it. And also because it’s sometimes intermittent, usually you see the person on their “fine” days. I think one thing that is happening with more blogs talking about it, people are starting to feel more comfortable telling their friends and family so I think more and more people are coming out of the closet about it. I think it helps when a friend or family tells them they don’t understand, they can say — well read this.

    • October 21, 2019 / 3:32 pm

      That’s really spot on about knowing others with a condition, and how we likely see them on the somewhat better days, too. I remember when I said to my mother something about having a stoma when I first had mine done and another blogger wrote something about the effect on their mental health, how they were struggling to adjust to it – I showed her that, because at the time I couldn’t find the words and didn’t feel I could explain it. It also helps knowing there are other people going through something similar and that gives you some back-up if ever you feel judged or are made to feel you’re ‘making a mountain out of a molehill’ because someone doesn’t understand and thinks it ‘can’t be that bad’. Thank you so much for your comment  ♥ I hope you have a lovely week ahead. xx

  27. October 20, 2019 / 10:54 pm

    great post as always, Caz. reminds me of a) how amazingly strong & wise you are! and 2) how while my issues are different from yours, I can still relate — often I just grin & bear stupid things people say — though at times when I can do it without anger that could quickly turn to rage &/or loathing, it helps if I try to remember a wise friend’s admonition that “we teach people how to treat us.” for instance, when I had cancer, soooo many people wanted to tell me all the horror stories they’d ever heard about so&so&so&so a billion times removed from anyone they really knew dying, etc! eventually I started heading off such conversations with, “is this going to end up inspiring? I’m only listening to inspiring stories…” at the same time, I still can’t feel friendly toward a so-called friend who referred to my eventual wellness as my being ‘in remission’…

    • October 21, 2019 / 3:38 pm

      Firstly, while I disagree with you thinking I’m strong & wise, I’m learning to take a compliment so thank you very much. Secondly, I’m so sorry you’ve had these kinds of responses. I can only imagine what it’s like going through cancer as I’ve not experienced it myself, but I’ve known people who have. Not in a million years would I contemplate telling someone with cancer horror stories like that; what would compel someone to do so ? I’m glad you took a different approach to ‘head off’ those types of conversations because they’re really the last thing you’d need. No matter how kind and patient we may be, conversations like that can be incredibly hurtful & ignorant, so I can understand the rage & loathing after a while. What did you say to your ‘friend’ who called your wellness ‘remission’? I wonder if some people just don’t consider the effect their words have, or if they simply don’t care, which reflects very poorly on them. Thank you for sharing this da-AL  ♥ Hugs & love to you, my friend. xx

  28. October 21, 2019 / 2:11 pm

    I say speak out. The more people that understand about chronic illnesses the easier it will be to not feel guilty when you LOOK fine but feel awful. Speak out. People will never know the pain felt every day, BUT they will at least understand.
    At least one more person in this world is aware.
    Thanks for calling this to our attention Caz.

    • October 21, 2019 / 3:39 pm

      I’d like to hope every little helps, so you’re right, the more it’s spoken about the better. Thank you, Darnell! How’s the writing coming along? I hope the week ahead is a good one for you! x

  29. October 22, 2019 / 8:58 am

    As someone who has narcolepsy, I can completely empathise with this. You’re doing an awesome job of raising awareness of invisible conditions Caz x

    • October 22, 2019 / 9:37 am

      I imagine narcolepsy being difficult to manage let alone try to get someone to understand what it’s like away from any preconceived stereotypes of the condition. I’m glad you liked the post, thank you lovely!  ♥ I hope you have a good week xx

  30. October 24, 2019 / 6:55 pm

    Caz, you did such a great job explaining this, identifying the mental/emotional/physical struggles of people with invisible disabilities, and providing suggestions for how we can change the stigma. Love the idea of the sign on the bathroom stall. Great article!

    • October 25, 2019 / 3:28 pm

      I’m so glad you liked it – thanks for the lovely comment, Lily, it’s much appreciated! I hope you have a restful weekend 🌷 xx

  31. October 27, 2019 / 4:06 am

    Years ago, a paraplegic friend and I had a very small nonprofit to assist physically challenged fiber artists with getting good exposure for their work and teaching them professional development. Well, during one of our upcoming events, a lot of women began calling me about their so-called invisible challenges – chronic depression, cancer, and fibro, to name a few. They always asked me the same thing: Is this a physical challenge? And my answer was always the same. “Well honey, it sure isn’t an out-of-body experience, is it?” And with that, they registered for the challenge and came up with some of the best art I have seen. So much true depth of emotion in it. So never put down a physical challenge unless you have lived in that other person’s shoes. What may not seem like a physical challenge to you may be the worst thing that person has ever dealt tieh and a lot of it may be because no one else acknowledges that person for what he or she feels. So yes, I acknowledged every single person, and every one of them who called just needed to be validated.

    I have to go to the oncologist every six months to get rechecked after my cancer surgery. When I get to the waiting room, I start a conversation with the ladies there and most of them are scared stiff. They don’t understand a lot of what is happening and all they have to go by is what the doctor tells them. The doctors often tend to be alarmists, having them take chemo and radiation regardless of what side the cancer is on, how old the person is, and the stage of the cancer they are at right then. Cancer is a big scary thing, because it is not about validation. It is all about not knowing what questions to ask, and to feel so afraid that they listen to whatever the doctor says. I am not saying the doctors are always wrong, for there are times when it makes sense to go the full path of treatment. And if you ask your friends who HAVE had cancer, they are all going to give you different experiences, just like having a baby for the first time and asking all your friends who have had one what it is like or what to expect. It’s terrifying! Anyone who says it is not is faking it. So you have to sort through the experiences you hear, but remember that the person is scared with not knowing what to ask. They need a different kind of validation, and you might or might not be able to provide it.

    I started out telling them the truth; how unexpected it was and how scared I was when I found out. I told them about the others who tried to tell me what they experienced, but none of those helped me. They had not faced what I was facing, and they definitely were not my age either. Nor did their doctors tell them the same things my doctor told me. So I had to start where they were; scared and not knowing who or what to believe or trust. I just told them how when I got my diagnosis, I started reading everything I could get my hands on about the kind of breast cancer I had. Even then, there were some conflicts, and my surgeon definitely filled me with those. He and his associates wanted me to take five days a week of radiation with the cancer which was removed from my left breast for six weeks. They also wanted me to take anti-hormonal medicine for five years! And this was when I was 75! If you know anything about radiation, if you take it on your left breast, you are more likely to die of a heart attack than the cancer, especially if you have just had the cancer removed. And women need those hormones to prevent them from having heart attacks. OK, you might disagree, and that is ok. Just do your own reading. Do your reading. And if anyone denies your physical challenge, remember to tell them, “Well honey, it sure isn’t an out-of-body experience, is it?”

    • October 31, 2019 / 9:53 am

      Wow, what you did – running that non-profit, listening to those stories, validating and acknowledging each person’s experience and fostering that artistic expression – was an amazing thing to have been able to do for others, you should be very proud. It’s people like you that can make such a difference in the lives of others. And very good points regarding cancer and what patients may be thinking and fearing. I do think that locus of control should be put back to the individual, so they can use the information as they will, make their own decisions and do their own reading. I hope your future checks go as smoothly as possible, Anne. You’re so right in how you phrase that question, it’s definitely not an out-of-body-experience.
      Thank you so much for such a fantastic, thought-provoking comment. It’s much appreciated. Hugs to you my lovely  ♥xx

  32. November 9, 2019 / 1:01 am

    Great post to help enhance awareness. More like these are needed

    • November 12, 2019 / 5:47 pm

      Thank you, I really appreciate that! Hopefully over time there will be more posts, more conversations, more awareness  ♥
      xx

  33. November 13, 2019 / 6:27 pm

    Hi from Anne once again. I think I told you how when one of my physically challenged friends and I had a small nonprofit to help physically challenged artists, we decided to do an exhibit and were inviting people from the wider web to participate. Well, I started getting a whole lot of calls from ladies who had the invisible challenges such as I do, and they were asking me if I considered those things a physical challenge. My answer was always the same. “Well, honey, it sure isn’t an out-of-body experience, is it?” And with that, I am not saying it healed them, but more importantly, it validated them, and that is the first and foremost thing any of us who suffer with those things need – validation that there IS something very real with us.

    Unfortunately for those of us who do have the invisible challenges, most of the public is even more unaware, and acting more ridiculous toward us. I know one of my challenged friends who is in a wheelchair, which is NOT even an invisible challenge, has people come up to her and talk really slow and loud as if she is developmentally challenged and deaf, when in fact, whe has neither one of those things. And then too, those lacking in knowledge ask us the dumbest questions about invisible challenges. I have PTSD, severe, amongst other challenges, some of which you and I share, and you would not believe the things people say to me.

    I used to work with special needs children and young adults for many years as a (by choice) substitute paraeducator (that means I often worked with those with had things such as MS or other things that left them only partly able to move around independently, as well as developmental challenges. That is the other thing that often gets me – ALL challenges that people suffer ARE in fact physical challenges. Our brain IS part of our body, so this mind-body dichotomy is really a dumb idea. Our bodies cannot function without our mind. And another thing. I use the word challenged for those with any kind of physical, developmental, or emotional challenges instead of the word “disabled.” Disabled makes it seem as if it is hopeless for us – no matter what, there is no hope, and it takes away the dignity from how people with challenges are viewed. So no for “disabled” for me. My own younger brother and only sibling came home 100% “disabled” from Vietnam, and he has more invisible challenges than he does physical challenges, and he has enough of both to be considered as such. I have worked with people with some form of challenges (yes, illiteracy and homelessness are also invisible challenges too) since I was 14 as a volunteer, and I will continue to work as an advocate/mentor for the remainder of my life. I turn 78 on the 22nd of this month, and I will do this for the remainder of my life, plus being an advocate for anti-bullying, which takes place amongst ALL ages and class levels and race and religious/spiritual levels. I wonder how many people know how many women with physical challenges (invisible or not) are bullied, tortured, raped and even murdered every year? I have a degree in Criminal Justice, and a minor in law, and I have done a lot of research on this issue. Did you know that children with special needs (often considered invisible challenges) when they are murdered, are simply classed with all the other “normal” children so that there is no way to know how many of them have died, but I can guarantee you that it is a huge number. And what about the silent victims – the newborn babies, who are often thrown away in trash cans or bins, or on the freeways in plastic bags or boxes or in an illegal abortion place that kills them when they are past the point of being considered ok to do so (which is never a good excuse)? We have a cemetery near here in Calimesa started by a lady many years ago – The Garden of Angels, and you can look it up on the Internet and read the touching story. And what about the chronic depression that leads people to suicide? This is also an invisible challenge. And often even the parents of youngsters who are more and more committing suicide often do not recognize or understand such challenges or how to deal with them sadly until it is too late. Then they want to sue the school districts, etc. but have their own invisible challenges in not being able to deal with the reality that they too failed their children.

    I cannot tell you, and some of you may know from personal experience, how many children suffer from being molested by a relative within their lifetime. This creates not only a physical, but an emotional challenge. And abuse within the school districts – teachers feeling that it is ok for them to speak badly to children even and especially if they are special needs, or even worse, to totally overlook them even if the child is very bright and really wants to be included. Yes, these things are ALL the invisible challenges, and I am quite sure there are even more that I have overlooked such as failure to thrive children and adults. It goes on and on and on. We need to be able to advocate for people with these challenges when we realize what is going on, and if we just open our eyes to reality, it is not that difficult to see such things.

    Thank you so kindly for addressing your own invisible challenges. You are helping not only your own self to advocate for yourself, but you are ultimately helping a lot of others who may not be able to stand up for themselves. It has taken me a long, LONG time to be able to advocate for myself and others from the ways I grew up. To this day, if someone begins to bully me, I have to fight a major battle to get it stopped before it gets out of hand. But little by little I do. It is horrible when we are already suffering more than we can hardly stand to deal with to have to speak up for ourselves, but if we continue to do it, there will come a day when things will change. Hugs and blessings, Anne always Remember, no matter HOW bad it is, we have a right and a duty to be true to ourselves and to speak up when people are not respecting our rights. I am doing that right now for my own challenges, and believe me, I want to cry a lot of days because it is WAY too much, but the alternative is far worse.

  34. November 15, 2019 / 5:24 pm

    Hello Caz This is just what we took in my Pain Management Course a few times already. It is never to late to know and become aware of what others have on their minds about us and our sicknesses. I am shocked and surprised by how many times you have hit the nail on the head in this blog post. Thank you very much for these thoughts about invisible and visible illnesses. Mine do not show on the outside but create havoc inside. At times people see how grey I look but other times when they say I look like I have color again in my face. I smile and say I use crayons at times lol

    Thank you once again Caz xxx

    • November 18, 2019 / 5:28 pm

      Thank you for sharing this, James. I’m both glad that you agreed with the points I made and found them relatable, and sad that you can relate at the same time. I love your response to when people say you have more colour – you use crayons! Brilliant 😂 I think a humorous response can be the best response sometimes! x

  35. December 7, 2019 / 9:11 am

    I understand everything you’re talking about here. People just don’t get it. They don’t know how you can look well but feel so bad. I know they mean well when they say “hope you feel better soon” but for those of us with hidden illnesses there is no such thing.

    • December 7, 2019 / 3:55 pm

      Absolutely, the whole ‘hope you feel better soon’ thing can be well meaning, but it can be a painful reminder of how others don’t ‘get it’, making us feel more alone in our experience. I’m sorry you understand all of this all too well, Dee. Thank you so much for your comment, it’s much appreciated  ♥ xx

Leave a Reply to Liz Cancel reply

Your email address will not be published. Required fields are marked *

Follow

Get the latest posts delivered to your mailbox:

%d bloggers like this:
Close Me
Looking for Something?
Search:
Post Categories: