It’s Invisible Disabilities Week! This is really important to me and Dizzy as we experience many invisible symptoms because of our MS (and currently no visible ones). Because of this me and Dizzy have decided to do a couple of posts on this topic, and what having an invisible disability means to us. 🙂 For our first post we have decided to do a list of 10 things that sum up what life is like for us with MS, and the invisible symptoms that come with it.
- Feeling sleepy all the time!
2. Looking really well, but actually feeling really bad.
3. Having one invisible illness but about 100 invisible symptoms.
4. Often forgetting things, even if it’s something you’ve just told me!
5. Having days which can be easier/harder than others.
6. Having to carefully plan everything.
7. Sometimes feeling sad, grumpy and/or frustrated. I do hope Dizzy isn’t implying this grumpy, sleepy looking mushroom is me… 🙂
8. Feeling guilty for the impact my illness has on the people around me.
9. Doing everything I can to cover up how ill I’m feeling.
10. For anyone else who finds invisible illnesses hard to understand, I spend a large portion of my life not knowing/understanding what’s going on with my body either! 🙂
What things would you like to highlight about having an invisible illness/disability? Are any of them the same as ours? 🙂 xxx
Having to deal with the “you don’t look sick comments/looks is one thing. Another is my arms serving as pin cushions for all the needles I get due to the IV and other treatments. Also, don’t forget about the heat and humidity being our kryptonite
Sometimes it feels like the list is endless! I never even know what to say when people say: ‘but you don’t look sick’. And definitely the heat, and cold… 🙂 xxx
The times when my illness does show and people express excessive concern or worry, when reality is My life is like this all the time whether it shows or not. Having to deal with the “hope you feel better soon” when all I want to say is, “This isn’t the flu. It isn’t going to magically get better”. The energy it takes pretending to be fine. The misinterpretation of my facial expression as I’m angry or upset when really I’m just trying to figure out what the heck I’m looking at.
I feel the same way, people find it very hard to comprehend the day in and day out of feeling rubbish. I also get people comparing their cold or flu symptoms to my MS symptoms. :/ xxx
I completely agree with you! It is can be so frustrating when people think that MS is like the flu or a cold of some sort. It takes a lot of energy to fake feeling okay to avoid comments we know we will hear.
Being a pest, not wanting to look out a bright window , even worse through a window with blinds ☹️
I think we all feel like we’re being a pest at times. :/ It is so difficult, but I tell myself that I’m sure others don’t see me as being one (hopefully!). Sending lots of hugs. xxx
I so agree with number 8. Protecting the people around us from worrying too much is exhausting, but we have to do it, because we love them and we need them.
I think a little button badge that says I may look fine, but I am still struggling might help wordless answer all those kindly meant” oh but you look so well!”s that we hear at work.
Great post.
It’s so true, and I think we can be so aware of the impact it has on them. Just not being able to see them as much, or do as much makes me feel guilty. I don’t want others to miss out on things, just because I can’t do them.
And your little badge idea is brilliant! We could get them in all sorts of bright colours! 🙂 xxx
Your list is very thorough and on point. I get overwhelmed, forgetful and I also often get something like claustrophobia (I guess this is the best way to describe it) when there is too much noise around me. Great post Heather and Dizzy! 🤗
I get that too in places. I get super dizzy and my co-ordination goes funny when I’m in places with too much going on. And can definitely relate to the feeling of being overwhelmed. x Sending donkey hugs and hope you’re having a good week Christy. 🙂 xxx
this was a great post but I would have been harsher lol. I have MSK (medullary sponge kidneys) so that means I have stones all of the time, 100s of them. Some large, some small. I have been lucky lately (knock on wood) because they have been dormant…but when they act up it is hell……(the pain is the second most painful thing to childbirth)….people don’t “get it” if I have to cancel plans at the last second or if I look “fine” and just don’t feel well. Living with an invisible disability isn’t easy…my heart goes out to you!
I’m quickly touching wood too! I’ve luckily never had kidney stones but I have heard that they are one of the most painful things to have. 🙁 People do find it very hard to understand when we look fine. Or if I’m feeling really awful I look tired, but that’s it. And then you get comments about how they feel tired too… x I really hope your stones continue to remain dormant. Sending hugs. xxx
What a brilliant post Heather! You do such a great job explaining what living with an invisible disability is like. I especially love #10 – so often we don’t have any idea what’s going on in our bodies. Of course, remembering that helps me realize that if I can’t understand it, I shouldn’t take it too personally when others can’t understand…. Sharing this on Pinterest and on my FB page. Hugs to you and Dizzy!
That’s what I always think. 🙂 It’s like when it takes people ages to start to understand what MS is, but it took me a while too aswell! 🙂 And thank you so much for sharing it Terri. 🙂 How are you finding twitter so far? 🙂 xxx
I’m still a little tentative with it because I don’t know what I’m doing, but I enjoy seeing everyone’s tweets and I’m kind of studying them to see what I can learn from them. Do you have any advice for me? 😊
It does take abit of time, and I’m not convinced anyone knows 100% what they’re doing with twitter. 🙂 But my advice would be to follow people with similar niches/interests, as you’ll make a lovely little group of twitter friends. 🙂 And post sort of regularlyish. Not that me and Dizzy are always great with that one, but everyone is really nice on twitter. 🙂 xxx
Thanks so much Heather! It’s good to know I’m not alone with not knowing what I’m doing. 😁
I guess I am the lone person here in the comments of this excellent post who does not have a disability, invisible or otherwise, but, as I have told Heather and Dizzy in the past, I never take my good health for granted, because I watched my mom, who was hit by a car at age 11, suffer with orthopedic issues her entire life. I would watch her take each painful step, in orthopedic shoes that were ill-fitting and she feared that she would take a humble, especially after she had two artificial hip surgeries. I watched my father leave and take all the money in the bank and leave my mom penniless and too young for Social Security, and she was sent to a doctor in Detroit, Michigan to be examined to go on “assistance” because she had not worked since I was born many decades before. She could barely walk, and the doctor said she was “fit as a fiddle” … she could not find a job, but as an only child, and one who was still living at home, we got by and I helped her out until she could receive Medicare and Social Security. I am sympathetic to each of you with your disability, because there are people in this world who will never have empathy, never have compassion and never “get it” that because you put up a brave front that really, you are putting one step ahead of the other and just barely getting by. People are silly sometimes and don’t use their heads before rendering senseless and cruel comments and so I am passing along a post from a Welsh woman named Zena whose blog “The Secret Blind” I follow. Zena is blind and was born with issues with her sight, so never had the luxury of perfect sight, even as a child. Her blog is about her beloved dog Munch, her seeing eye dog, which she only got 18 months ago. This particular post is about some of the questions people ask her … yes, they have the audacity to ask these questions.
https://wordpress.com/read/blogs/116623378/posts/558
I’m so sorry your mum had to go through all that, and how ridiculous to say she was fit to work! You really wonder how these people can get away with it. xx And thank you for sharing this post. I hadn’t read it yet, but have seen the photo of her adorable doggy. 🙂 xxx
Thanks Heather – she was very bitter about it and you know there are people that are on medical assistance and don’t need it. I wanted to share that post because I think people just don’t think when they open their mouth sometimes … that is sad. Zena writes interesting posts and she is writing a book about her life with Munch and interacting with people. He also becomes an emotional support dog in some instances. He does not look like your traditional guide dog. I have empathy for people who suffer with pain, whether it is visible or not. I feel badly for you, or Jennifer, who must curb your activities and suffer the consequences of MS. I hope and pray that one day a cure will be found – I do not understand sending men to the moon … we’ll never live on the moon, and if we do, it is a colossal waste of time. I got here late tonight – I had a dentist appointment and was a little late getting to work this morning, but got to work and my internet went out four times and had a big project to do. One of those days – got it done, but after many fits and starts! {{{ }}}
I hope today is turning out to be abit better. How was the dentist? I hate going! 🙂 xxx
Taking a wee break for these never-ending charts of numbers! As to my day, so far so good Heather – thank you for asking. I sure hope they have the Comcast internet issue resolved and the techs don’t take down the internet again as we have more work to do on this project today. It was cold out today! I could not believe it – still saying a flurry here or there and November weather. No cavities for me and good to go for the next six months … I like my dentist and hygienist … they are both very gentle and their staff are super too and I have known people who had dentist who are not gentle and as a result hate going to the dentist. Have a good day – hope your Autumn day is sunny, even if not warm. {{{ }}}
As my mental illness is also invisible I can really understand your points. Beautiful written post ❤️ It’s hard that people think we aren’t ill when we truly are ill. Just because you don’t see it doesn’t mean it doesn’t exist and is real. I wish people would be more understanding
So do I, and that people were just more aware. It would make such a difference. xxx
I can relate to four and a half out of ten things. Sometimes my husband forgets, and making frequent stops when we go doing things. I have to remind him that I only have energy to do three simple things, short drive, short walks…
Thank you for your post!! 🙂
Thank you Miriam. x And I have that one too, of having to remind people that I can’t do as much as they are able too. xx Sending hugs 🙂 xxx
Yes, and I learned not to apologize when I can’t do it. 🙂 xox
Having the cousin to MS, I understand how you feel. I truly dislike the “You look fine” remarks. I just want to scream “well I’m not!!” But I really think it wouldn’t matter. Maybe a flashing neon sign would work better.
Lol, that’s how I sometimes feel. Or sometimes I’ll just say ‘thanks…’ because I don’t know how else to respond, but then they take that to mean that I am really fine. I think a sign might be a good idea. 🙂 xxx
I usually say, “thank you, but how exactly did you expect me look?” Sometimes I get a kick out of watching their faces as they try to make nice LOL Awful, I know, but I need a good laugh now and then.
Hehe, I love that! Bet they don’t say it again after that. 🙂 xxx
I don’t know lol I usually walk away!!
Lol. 🙂 xxx
I agree with 2,3 and 7, except I have more than one condition and so many symptoms. I also posted about Invisible Disability Awareness week but having a lot of FB troubles.
I think people without invisible illnesses don’t always realise just how many symptoms do come with them! There are so many. xx What’s your fb doing? xxx
It’s locked me out because I went to change some incorrect information, now asked me to confirm my identity. Only problem is that I only have it to join groups and to create my FB page for the website so people can follow me, not for my own personal use so the only information I had on my personal page is my full name, no photo or anything of me so I don’t think the ID will work. 🙁
Oh no! I don’t even know what to suggest. There must be a way of getting back into it though. I would try the ID anyway and just see what happens. xxx
I don’t know how to follow you without using my personal FB page. I want to like your Dizzy donkey FB page using my AllheART page.
There is definitely a way! I shall look for yours and follow you on there from my page, then you should be able to follow me back. 🙂 Might be abit later though as I can’t quite remember how to do it myself… but I know I have before. 🙂 xxx
It’s not under AllheART because that was already taken and they don’t allow capitilisation in names so I’m Allheart Australia I think, you’ll find it by the symbol.
It is! I found the other Allheart, so was abit confused for a minute, but have found you now. 🙂 xxx
I can’t find your fb page. 🙁 xxx
It’s under Allheart Australia.
Found and liked! If you go onto my page, click on the 3 little dots next to the like, share buttons, and there’s an option to like as your page instead of your personal profile. 🙂 xxx
Sometimes little kids may be afraid to come near you when you are using a wheelchair. They may be mes frightened they can catch what you have. Let them know you are not contagious (unless you have a cold or something)! Explain them to them in simple words what you have – a confused immune system, sometimes it acts like everyone else’s the rest of the time it seems to go on strike attacking your own body!
That’s a really good point Jeanette. Thank you. 🙂 xxx
A great post to raise awareness and some really good points, especially about how each day can be different (where things are easier/harder, it doesn’t stay the same), how it’s unpredictable yet you need to plan (a conundrum in itself!) and the emotional aspect too (grumpy is my middle name..) xx
It is a conundrum. I plan and then wake up not able to do half of what I planned a lot of the time anyway. :/ And I’m glad I’m not the only one that gets abit grumpy with it all. x Hope you’re having a good week Caz. 🙂 xxx
Urgh feeling tired all the time is the worst, that and people saying ‘but you don’t look sick’ NO THATS WHY ITS CALLED INVISIBLE!!!
People miss the ‘invisible’ part. 🙃 X I find the feeling tired all the time part the worst too. I feel I need to be charged up! Xxx
Great list! It’s frustrating that people don’t believe you are ill because they can’t see it but I guess it’s also a blessing cause I can walk around in public without people asking me questions about my illness.
There are positives too. X It just seems to be very hard for people to understand, and I always expect people to be more aware when there are so many people with invisible illnesses. Xxx
Great list and I can relate to all of them. Thank you for spreading awareness. I think more people with invisible illnesses should be featured on TV as normal cast members. It would really help others become more knowledgeable. Someday! 🙂
I completely agree. There’s really not much out there about invisible illnesses at all. Until I had MS I had no idea. I think your idea would be a great one of helping to raise awareness! 🙂 xxx
I am so sorry for my very late comment, but I must say this was a brilliant post that hit the nail on the head with the invisible illness and symptoms. I honestly think the most frustrating thing I hear way too much is, “You don’t look sick” and “Maybe a change in your diet or exercising would help.” Living with an invisible illness has many frustrating parts, but we all just do the best we can. Thank you Heather & Dizzy for this truly amazing post!
I think they are things we all hear to often. x And don’t worry about your late comment, I imagine you’re still getting everything properly sorted out your move and with your new job. 🙂 How is it all going now? xxx
You are so understanding and kind! The sorting is a work in progress. I wasn’t able to do much with it over the weekend because I felt awful. My guess is my body is adjusting to the change in the weather. For some reason I adjust to new temperatures SLOWLY! It will get better soon, well hopefully. I hope you and Dizzy had a wonderful weekend! Please send my love to Dizzy! xxx
Don’t overdo it. I always think the before moving bit is the worst, you can sort stuff out as slowly as you want afterwards. x Is it getting much colder there now? x Dizzy sends her love and a big donkey hug! xxx
I am trying to not overdo things, but I am not good at pacing myself. It is getting crazy cold here and fast! It was chilly this past weekend, but today was so cold!!! I think it is going to be chilly for the next few days and it takes a tole on my body. I don’t adjust fast to temperature changes, but it will be okay. It is getting hot where you are, right? Please tell Dizzy her donkey hugs and love make me smile and makes for a good start to the week!!
It’s heading slowly into winter here. It’s a little colder today but so far we have been quite lucky. I’m better in the cold than the heat though, as long as I don’t venture out in it for to long. As soon as my ears feel cold, I get dizzy. x Keep warm and snuggly. 🙂 xxx
Seems like we are in the same situation. We are working our way to winter and I often have lots of pain when it gets cold because I get tense. But the heat drains me so I guess it is a catch 22. I am sure Dizzy will do her best to keep you warm because she is so super loving!! My cats try to keep me warm in the colder temperatures, but I think it is because they get cold too! Stay warm sweetie! xx
It does mean there’s only a couple of small periods of the year where the temperature is just perfect for us! 🙂 And keep warm too. Lots of love. xxx
Isn’t that crazy we have only a few periods of an entire year the temperatures are wonderful and we are comfortable! I hope you are feeling well today and staying warm of course! xxx
It’s been a bit warmer today! 🙂 but it really is, love spring and autumn but they don’t last long enough. 🙂 Hope you’re keeping warm. ❤xxx
I agree with you! My favorite season is autumn, but it never lasts long enough where I live. Spring is my second favorite, but winter is my least favorite! Today wasn’t bad, but the rest of the week isn’t going to be nice. It is going to be cold and rain Friday. YUCKY!! I hope your weather stays on the warmer side!! xx
What a great post! I felt much the same when I was having radiation therapy for a rare form of cancer (radiation therapy has side effects, which didn’t show, but affected one nonetheless).
Thank you Jan. 🙂 So many people experience invisible symptoms, but yet there seems to be so little understanding of them. xxx
A great list! For me its mental illness, that’s my invisible disability, I would add always feeling anxious but looking functional to the list! Also hangover effects from meds that others don’t notice but they are there and make you sleepy, groggy etc!
Mental illness is a really important one to add. Thank you. x Anxiety is one for me too. You can look quite calm on the outside, but on the inside it’s the complete opposite! xxx
Wow! Such a great list you have shared here,
Thanks for the informative information
Keep it up
Thank you so much Jesica. 🙂 xxx