Hidden disability

[Szt]

1 hour ago, Toofarfromthesea said:

 

I looked at walkers with seats (rollators) but but me the issue was how do I deal with my luggage.  I think I am going to go with something like the collapsible stool that @mom says linked to upthread.  It's big advantages, to me, is that it is very portable, very lightweight (circa 2 lbs), has an adjustable shoulder strap I can hang off my leggage handle so it  doesn't interfere with rolling my luggage, and generally has a much higher weight limit than the other portable seat options.  Plus it is very reasonably priced $20)

 

Here's a link to one I've been looking at:  https://www.amazon.com/Splendole-Telescopic-Folding-Camping-Adjustable/dp/B08HPPNWBW/ref=pd_ci_mcx_mh_mcx_views_2?pd_rd_w=cggjV&content-id=amzn1.sym.225b4624-972d-4629-9040-f1bf9923dd95%3Aamzn1.symc.40e6a10e-cbc4-4fa5-81e3-4435ff64d03b&pf_rd_p=225b4624-972d-4629-9040-f1bf9923dd95&pf_rd_r=M539Y25VFAEBJPM8TYZ2&pd_rd_wg=Vse7K&pd_rd_r=718bc43a-f0ee-401e-8c00-623f9dd5a965&pd_rd_i=B08HPPNWBW&th=1

 

 

Oooh. That does look good. You could also use it to put up your feet at the airport. With my back, I can’t stand to sit without my feet up for a long time. So long waits in the airport are hard too. 
And before another person tells me I should stop traveling- it’s worth the pain!

[Szt]

23 hours ago, John Bull said:

Not being able to stand for more than 10 minutes (currently 15 - 20 minutes for myself) is something many of us have to put up with, although not the potential to pass out.

When I'm with my partner or someone else I'll join a long line with them for a while (until a few in line behind are aware of me), then apologise to them that I gotta go sit down.

If I'm alone (for instance in a line for a bank cashier or a check-out), after a while I simply say the same to those in earshot behind me. When they're near the front I re-join them -  I've never had any criticism for doing that.

That's certainly happened to us in lines at US airports, probably elsewhere in the US - Americans have the same attitude as Brits, they know we're not cutting-in and happily accept the situation.  

 

If it's just my partner & I, and there are no seats with visibility to anywhere near the front of the line, we square it with those in line behind us that she'll step out of line to collect me. Again no problem.

I don't recall ever being being in that situation alone, but I feel sure that someone in line behind me would do likewise if asked.

 

Since you have warning that you may pass out, can you not do the same?

 

I know something about Ta-Da & similar cane/chairs suggested by @Flatbush Flyer  and  @donaldsc because I'm already considering getting one for odd occasions when I risk a lot of standing. 

 

JB 🙂

 

 

I do the same when I can. I also use a wheelchair in airports. 

[Szt]

23 hours ago, StollyBolly said:

Agree with the need to find a way to sit and move along the line if there is no other way.  Most people are very tolerant of someone who truly needs assistance.  
 

I see more and more abuse of wheel chairs at airports and boarding of “young children”.  A 12 yo is not in need of preboarding because he’s a child just to let the entire family on first.  

 

 

 

 

 

 

 

 

You hit the nail On the head. I don’t look like a senior citizen or have any visible disability. And I can walk and move fine for limited amounts of time. So it looks to others like I’m abusing. That’s why I wanted to post here. To help people realize disabilities are not always obvious. Although I haven’t dyed my hair since Covid started. So maybe my new grey look will help. 😁

[Szt]

When I lived in Las Vegas there were always long lines for the buffets. When it was more than two of us we could send a runner from the group to come get me when they were being seated. But some of the casinos had a system where they’d give you a number. You could go do what you want as long as you watch the boards posted where they would show group numbers. When your group is up you go get seated. Worked great. I wish more places had that. 

[Valen9]

You said you looked at rollators, but they can be tough on the back or arms.  My mom suggested an upright style where you lean on the armrests.  Here is an example: https://www.shopjourney.com/products/upwalker-ez-lite

 

As for luggage, you could put one bag on the seat as you walk.  If you check your bags with the porter, might that be enough for most purposes?

[simplelife]

National Disability ID Card - Invisible Disabilities® Association

[sanger727]

I really think that you are reading a bit more into the ‘invisible’ disability due to insecurity. It seems clear that you have an actual disability that requires special accommodation; which you prefer not to use because you are insecure about it. That just makes it harder for you and everyone around you. 
 

Expecting to jump to the front of every line with you husband isn’t fair to the others onboard. Expecting to stand in long lines and pass out repeatedly isn’t fair to you. There’s a middle ground where you can sit in lines to near lines and wait your turn. You just can’t be so concerned with what people think about you.

 

as far as the Disney thing; something had to be done to find that ‘middle ground’. I used to work at an amusement park and sure, there was abuse from people jumping lines. Even people with legitimate disabilities got preferential treatment by jumping lines. What my park settled on what a ride printout. You took it up to the handicap accessible section and employee estimated how long the line was and wrote down a time to return. You couldn’t be in more  than one ‘line’ at a time. Perfectly fair.

[Szt]

32 minutes ago, sanger727 said:

I really think that you are reading a bit more into the ‘invisible’ disability due to insecurity. It seems clear that you have an actual disability that requires special accommodation; which you prefer not to use because you are insecure about it. That just makes it harder for you and everyone around you. 
 

Expecting to jump to the front of every line with you husband isn’t fair to the others onboard. Expecting to stand in long lines and pass out repeatedly isn’t fair to you. There’s a middle ground where you can sit in lines to near lines and wait your turn. You just can’t be so concerned with what people think about you.

 

as far as the Disney thing; something had to be done to find that ‘middle ground’. I used to work at an amusement park and sure, there was abuse from people jumping lines. Even people with legitimate disabilities got preferential treatment by jumping lines. What my park settled on what a ride printout. You took it up to the handicap accessible section and employee estimated how long the line was and wrote down a time to return. You couldn’t be in more  than one ‘line’ at a time. Perfectly fair.

I think you misunderstand. My husband stands in line while I wait nearby. When he gets to the front, I join him. So I am waiting my turn. If I could stand in line I’d be there with my husband. I don’t want any special accommodations other than a place I can wait my turn out of the sun, sitting. It’s just there isn’t always a place to do that. All I was asking was for suggestions in these instances. I got some great ideas here. I also wanted to raise awareness to people with disabilities you can’t see. I’m not being insecure. I think it’s natural to not want to seem rude. 

[Szt]

Last time I was at Disney we got the fast pass for everything we could. We didn’t go on any rides that didn’t offer it. But I think my Disney days are over. You reach a point where those “exciting” rides don’t feel so good. And Jungle Cruise, haunted house and It’s a Small World get a little boring after so many times. 

[bwgreen]

I have a neurological condition that makes using a wheelchair in the airports absolutely essential.  When I first started, it was hard getting over my own self-consciousness of needing help.  Also when I started using a cane or a rollator.  But those around me were glad to see it - the usual reaction was "it's about time!" as they knew (the hard way) what could happen if I took a tumble (I had a fall years ago at work that necessitated a trip to the hospital 😞 .

 

Do what you need to do for yourself (I know it's easier to say this than to do it!) and don't worry what those around you think.

[candasun]

I understand having a problem that is not visible or even easily explained to people. I have a severe phobia of bees and if I do try to tell somebody that, usually trying to explain a panic attack while apologizing for running them over, they are very nice and try to be helpful but usually end up saying something like "I understand, I don't like them either". They are trying to be nice, but there is a difference between not liking them and jumping out of a moving vehicle, trying to jump off an amusement park ride, and peeing your pants as an adult while sitting in your car because you are afraid to get out of the car and run to the house. After years of therapy, I can at least get to my car to go to work and stuff most days but still have people that I am close to "on call" in case I have one in my house or something as well as various anxiety meds and sedatives. Please try to be understanding, and before getting angry with somebody, try to think of a few reasons they may be doing what they are doing or not doing. Try to assume that it may be something you can't see or don't know. One of the reasons that I love cruising; no bees once sailing.🚢

[Szt]

6 minutes ago, candasun said:

I understand having a problem that is not visible or even easily explained to people. I have a severe phobia of bees and if I do try to tell somebody that, usually trying to explain a panic attack while apologizing for running them over, they are very nice and try to be helpful but usually end up saying something like "I understand, I don't like them either". They are trying to be nice, but there is a difference between not liking them and jumping out of a moving vehicle, trying to jump off an amusement park ride, and peeing your pants as an adult while sitting in your car because you are afraid to get out of the car and run to the house. After years of therapy, I can at least get to my car to go to work and stuff most days but still have people that I am close to "on call" in case I have one in my house or something as well as various anxiety meds and sedatives. Please try to be understanding, and before getting angry with somebody, try to think of a few reasons they may be doing what they are doing or not doing. Try to assume that it may be something you can't see or don't know. One of the reasons that I love cruising; no bees once sailing.🚢

Maybe they should make medical alert bracelets for stuff like that. If people saw that maybe they’d be more forgiving. I have severe arachnophobia. Not quite as bad as your bee phobia. And for some reason they don’t bother me as much outside. But anything that gives me an  adrenaline rush makes me pass out. 

[jsn55]

Some "people" will never understand, they will always point fingers.  The only solution for someone with an invisible disability is to change your outlook on being out in public.  As long as you continue to be concerned about what others think, you'll have a problem.  Nobody else has a problem, just you.  Stop worrying about it, find a solution that suits you and your problem will disappear.  How?  See a behavioural therapist ... no need for any deep Freudian analysis, a good therapist can teach you how to cope with this insecurity fairly quickly.

[sabookkeeper]

My advice is not to worry about what other think.  I have used a walker (rollator) since I was 55.  I am now 65 and this will be my first cruise with a wheelchair.  I know my limits and I can't worry if people look at me and don't see my disability.  

[Szt]

Thank you all for such kind thoughts and good suggestions. Many of you misunderstand. It’s not about being embarrassed. Yes, passing out is embarrassing. But I rarely do that now that I know when it’s coming on. I don’t use a Walker because, for 1, I don’t need it- yet. And 2 because I hate carrying extra things around. I already have to carry a cpap on with me. I won’t even carry an umbrella. And it’s not because I worry about what others think. It’s because I like to leave my hands free for taking pictures. 
Now that I have learned from responses here that I can carry a seat that clips on or can go in my backpack, I’m ready to hit the seas again!

[roomba920]

Do you have a handicap placard? If so, maybe bring it with it you, and flash it to people as you make your requests.

[DisabledSeawoman]

Orthostatic Intolerance? POTS? If you are seeing a cardiologist or neurologist for care and have a diagnosis, then you are well within your rights to request special accommodations. I would be providing a letter from your doctor to the cruise liner prior to departure so that you discuss any appropriate accommodations.
 

I have POTS, and personally, I don’t feel the need to “push in”, but if a chair could be placed in the shade, at check in, I would happily wait until it would have been my turn should I have been able to stand in the queue. I do this whenever I have to queue. People are understanding once the realise that you don’t want jump the queue, your body’s thermostat just doesn’t work properly! 

[Szt]

4 hours ago, DisabledSeawoman said:

Orthostatic Intolerance? POTS? If you are seeing a cardiologist or neurologist for care and have a diagnosis, then you are well within your rights to request special accommodations. I would be providing a letter from your doctor to the cruise liner prior to departure so that you discuss any appropriate accommodations.
 

I have POTS, and personally, I don’t feel the need to “push in”, but if a chair could be placed in the shade, at check in, I would happily wait until it would have been my turn should I have been able to stand in the queue. I do this whenever I have to queue. People are understanding once the realise that you don’t want jump the queue, your body’s thermostat just doesn’t work properly! 

Vaso Depressor Syndrome is very similar to POTS. Most people have no idea what either is. So I’m sure you know exactly what I mean. It’s not that I’m embarrassed. I know I have the right to ask for special accommodations. And when I tell people they are very kind and understanding. I simply don’t like to appear rude. It’s a hard disability to explain. For me it’s anything that causes me to have an adrenaline rush. So pain, heat or anxiety are all triggers. I’m like the hulk only I don’t get big and green or smash things. But saying my thermostats doesn’t work right is a simple explanation. I like that. Thank you. 

[DisabledSeawoman]

Yep totally get it. It’s tough., especially when the weather makes your condition worse. How can you explain THAT to people in a queue?!  That’s why I avoid the entire indignity of it and make arrangements before hand, or get a friend/ support worker to go to the front of the queue and advocate with my medical evidence. It’s not worth being sick for 2 days of your cruise. 
 

 

[fabnfortysomething]

my husband has rheumatoid arthritis and has had multiple hip surgeries

he also suffered a brain haemorrage whcih causes disorientation issues in crowds

 

we have requested whhelchair assistance in airports which usually fast tracks through security and immigration

However last year in USA an airport employee was refusing to let anyone fast track unless they were wearing sunflower lanyards so caused wheelchair assistance guys to have to wind round long way which meant more of their time wasted before they couls get back to assist other passengers

I had always understood sunflower lanyards to be for hidden disabilities such as autism

however we now have one for him which allows you to list your difficulties

 

I also agree that seat sticks/canes are a great idea when in lines  

[Szt]

4 hours ago, fabnfortysomething said:

my husband has rheumatoid arthritis and has had multiple hip surgeries

he also suffered a brain haemorrage whcih causes disorientation issues in crowds

 

we have requested whhelchair assistance in airports which usually fast tracks through security and immigration

However last year in USA an airport employee was refusing to let anyone fast track unless they were wearing sunflower lanyards so caused wheelchair assistance guys to have to wind round long way which meant more of their time wasted before they couls get back to assist other passengers

I had always understood sunflower lanyards to be for hidden disabilities such as autism

however we now have one for him which allows you to list your difficulties

 

I also agree that seat sticks/canes are a great idea when in lines  

Where do you get sunflower lanyards? I never heard of that. 

[fabnfortysomething]

7 hours ago, Szt said:

Where do you get sunflower lanyards? I never heard of that. 

https://hdsunflower.com/uk/insights/post/for-people-with-non-visible-disabilities

[jsn55]

7 hours ago, fabnfortysomething said:

https://hdsunflower.com/uk/insights/post/for-people-with-non-visible-disabilities

This is a terrific idea ... it's been around since 2016 and we world travellers never heard about it?  Seems like there's not been enough publicity to make people aware of the sunflower badge.  

[Szt]

I see the sunflower is only good for UK countries. Bummer. I’m from the US. 

[fabnfortysomething]

1 hour ago, Szt said:

I see the sunflower is only good for UK countries. Bummer. I’m from the US. 

if you look closer at the link it says where to go for other countries-I think its a worldwide thing and as I say we only noticed it being implemented in USA to take preference over obviously disabled passengers