Explaining Disability to Others..ESP. At DL/DCA

[rewardsinlife]

This is kind of a rant and question at the same time...and maybe a little whine...so if you are not ready to read a post like this..it is ok to leave.

...ok....
1. explaining the symptoms of my disability to a dr. - easy at this point..ESP. Since I had to go to so many to find the right diagnosis.

2. Explaining symptoms of disability to a friend- more difficult...but alright because not many friends know anyway.

3. Explaining disability to a stranger- harder but still manageable with some awkwardness in explaining it without trying to reveal everything but get the point across.

4. Explaining my symptoms to my family- near impossible.

What do I say to my brother who I grew up with when I beg for him to slow down because my body is saying I can't walk that fast? He just looks at me like I am crazy and says I act like I am 70 years old. Problem is..my body is pretty wrecked from my disability. ..but my mind is not. I am actually 26 and would love to run through Disneyland. But my body screams to me that it is not able to hold up just walking down main street. My family does know my diagnosis...I just received it in May after surgery, maybe it just takes more time for them to understand? The rest of my family is much the same way in not talking about it and ignoring it until I literally have to stop dead in my tracks and sit on a curb to recover from walking less than half a block.

I have ..or am in the process of accepting that I have a chronic disability and permanent damage to my muscles and nerves from the disability. My dr. Is on the same page..ESP. After the surgery and seeing the scar tissue and other damage firsthand. How do I show my family that I am trying my best but in reality will most likely never make it completely back to 100 percent? Do I keep verbalizing imy symptoms like I have to do to my dr., friends, and strangers? I am at such a loss. Our family finally saved up enough money to get AP to go back to DL for the year and I want everyone to be on the same page. ( obviously, it is easier to take the WC we already have for me to DL and keep it in the car until I get exhausted and grab it then..then not coming prepared...and have my family under the false pretense that I will just have to make it and if not shell out 30 bucks for a rental one or leave much earlier than expected. )

Does anyone have suggestions? Also know that it took close to 5 years to get this correct diagnosis ..so it has been quite a bumpy and emotional road to finally have an answer.

 

[lanejudy]

I'm so sorry your family doesn't want to understand; sometimes it's hardest for those closest to use to recognize limitations and not just "see" what they expect of you.

I'd go at your pace. Tell the family you need to go slower. Tell them again. Suggest they go ahead and plan to meet somewhere at a certain time. Let them know you don't want your disability to impact their vacation. After a bit, I expect they'll learn to slow down to your pace. But you'll have to steel yourself to let them go on their own faster pace if they so desire. I know it's not fun or the best, but the other option is to push yourself too hard and/or have them frustrated with you. Until they are ready to accept the situation for what it is, there's not much you can do other than allowing them to go.

Good luck!

 

[bidnow5]

Sorry you are going thru this family and coworkers were the ones that never really seemed to understand my issues. I used to get but you look healthy from coworkers and a few family members you to just think I was looking for attention.

It took me years but I just finally said this is me if you can't deal with it then its your problem. That was when I started using a mobility scooter with lots of looks from family members but it didn't take long after that to get them to understand

 

[Schmeck]

This is kind of a rant and question at the same time...and maybe a little whine...so if you are not ready to read a post like this..it is ok to leave.

...ok....
1. explaining the symptoms of my disability to a dr. - easy at this point..ESP. Since I had to go to so many to find the right diagnosis.

2. Explaining symptoms of disability to a friend- more difficult...but alright because not many friends know anyway.

3. Explaining disability to a stranger- harder but still manageable with some awkwardness in explaining it without trying to reveal everything but get the point across.

4. Explaining my symptoms to my family- near impossible.

What do I say to my brother who I grew up with when I beg for him to slow down because my body is saying I can't walk that fast? He just looks at me like I am crazy and says I act like I am 70 years old. Problem is..my body is pretty wrecked from my disability. ..but my mind is not. I am actually 26 and would love to run through Disneyland. But my body screams to me that it is not able to hold up just walking down main street. My family does know my diagnosis...I just received it in May after surgery, maybe it just takes more time for them to understand? The rest of my family is much the same way in not talking about it and ignoring it until I literally have to stop dead in my tracks and sit on a curb to recover from walking less than half a block.

I have ..or am in the process of accepting that I have a chronic disability and permanent damage to my muscles and nerves from the disability. My dr. Is on the same page..ESP. After the surgery and seeing the scar tissue and other damage firsthand. How do I show my family that I am trying my best but in reality will most likely never make it completely back to 100 percent? Do I keep verbalizing imy symptoms like I have to do to my dr., friends, and strangers? I am at such a loss. Our family finally saved up enough money to get AP to go back to DL for the year and I want everyone to be on the same page. ( obviously, it is easier to take the WC we already have for me to DL and keep it in the car until I get exhausted and grab it then..then not coming prepared...and have my family under the false pretense that I will just have to make it and if not shell out 30 bucks for a rental one or leave much earlier than expected. )

Does anyone have suggestions? Also know that it took close to 5 years to get this correct diagnosis ..so it has been quite a bumpy and emotional road to finally have an answer.

Why not do the whole trip in an ECV or use your wheelchair? Why do you want to hurt/punish yourself to the point where you collapse on the curb?

You are 26 years old - an adult - see to your own needs, your life will be so much better for it. Don't expect the others to slow down for you (although it would be wonderful if they did, it sounds like they don't care) just be prepared to take care of yourself. Is there someone you could invite that would like to travel the parks at a much more leisurely, sedate pace?

I say this from experience. I have a spouse who refused for years to acknowledge that the melanoma re-excision surgery I had on my calf, heck the whole melanoma diagnosis, changed my ability to hike up mountains, walk up the hill we lived on, etc. He tried to bully me into doing more than I felt comfortable, and I finally snapped and gave him an earful (a very loud earful!) and then burst into tears. He thought I was 'just out of shape', when I was actually tearing scar tissue adhesions over and over again, making every step more and more painful. I was ripping the cells off of my calf muscle and causing a lot of structure damage too, just to try to keep up with him.

Now I walk at my pace if we go up our hill, and I don't go half as often as he asks me to. He has started respecting my answer "no", although I still get upset when he doesn't stay with me, and walks twenty paces ahead. It's a work in progress.

 

[powellrj]

My family is like yours. They understand when they want to. Other times they get mad because I can't do the things I use to be able to do. Life is much easier for me when I use a cane to walk, but they hate it when I use my cane, so I just struggle along behind them telling them to go ahead and I'll catch up.

I had a car accident in January that made me even worse than I was before, so anymore people I don't know well I just tell them I was in a car accident. Short and sweet and I don't have to try to explain something long that they may or may not understand

 

[WheeledTraveler]

I've been through this with my own family. It wasn't that they didn't know and mostly not even that they didn't believe, because they were in denial. Parents don't like seeing their kids, of any age, have health problems and, especially if they don't see the person every day, it's easier to pretend the problems aren't there. Siblings may take their cues from parents, have their own sibling rivalry issues, or just be far more clueless. It took me over 10 years to get diagnosed after problems started, which also didn't help with the denial, and then somehow another almost 2 before my brother found out what the diagnosis was. It's not that he didn't know there were problems and I'm sure my parents told him the name at some point, but he wasn't seeing me often and to him it wasn't important so he didn't remember. (It actually may be very important later on because I'm positive he has the same condition just without as many or as severe symptoms, but right now he isn't having problems that are limiting.)

What you have to do is really just insist on doing things your way. As a previous poster said, tell them to go ahead of you and that you'll catch up or meet them at a set spot. If you can, use your wheelchair, since it sounds like you need it. If you can't self-propel, do you live close enough to be able to bring a supportive friend who can/is willing to push? If you can't do either, can you rent an ECV? The more you accommodate your family, the longer it will take them to deal with it. It's a matter of "show not tell". If you do walk and need to sit, sit. Before I started using a wheelchair most of the time, I sat on the ground or floor in more places than I can count. I'm sure I sat on some spots that were gross in ways I couldn't see, but it was better than falling (falling is more demonstrative, but not as safe and I put my safety first when possible).

I know it's hard to accept acquiring any sort of disability and it would definitely be easier if everyone else didn't go through the same process, or at least didn't dump their process on you. Feel free to correct me, but it somewhat sounds like you may be more willing to accommodate them because of your own issues with accepting what's going on? It's a natural thing to do (I certainly have and still sometimes do). I've found the best way combat it is to remind myself that if I push too much, I'm actually risking the chance of making myself worse, not better. Do you know the Spoon Theory? If so, have you shown it to your family? It's a good analogy, although it missed the part where, if you use up all your "spoons" for a day, you could possibly loose your daily allotment of "spoons" not only for the next day, but permanently. The more you overdo, the harder it will be to recover.

 

[old lady]

I hate it when people try to Spoon feed you or force it on you. Disable Adults hate that and some disable children learn the wrong thing.

 

[Schmeck]

I hate it when people try to Spoon feed you or force it on you. Disable Adults hate that and some disable children learn the wrong thing.

Force what on whom? And what do disabled adults hate? Are you talking about the PP's spoon theory (an allotment analogy) or the OP's dilemma that her family does not accept her disability? And what wrong thing do disabled children learn? I'm sorry, but I just don't understand your post.

 

[bopper]

Have you said "I have <diagnosis>" or have you tried to make it something they could identify with?


"After my surgery, the doctor has diagnosed me with <diagnosis>. This affects the muscles and nerves in my legs. What that means is I have 50% of the strength you do in your muscles. Have you ever (climbed a hill and then had jelly legs/had your leg fall asleep/something else that is similar) and then you tried to walk? That is what is like for me all the time. Bro said I walk like a 70 year old lady...that is true. You need to think of me like trying to take grandma to Disneyland. I cannot keep up if I walk. What i am thinking is if we bring the wheelchair with us when we go. Bro can push me and then I can go as fast as he wants! I will save my strength for getting on and off the rides. What do you guys thing about that?

 

[seashoreCM]

You do not need to explain it.

If you feel more comfortable on your own using a cane, then keep using the cane when going with others.

Even if you feel you are getting too hot and sweaty, then feel free to slow down or stop or sit down on the curb or step inside a store to enjoy the air conditioning for a few minutes.

They keep saying, "no pain, no gain." But if you choose "no gain" to avoid the pain, then that's your decision.

If you need a Guest Assistance Card, you do not need to explain any medical terms or problems. Instead all you need to do is explain what physical things (like the sun beating down on your head for too long) are unusually hard for you that are not hard for the average person. Note that for most issues involving walking endurance, you will be advised to get a wheelchair (or ECV) before you are offered a GAC.

Psst! I suggest not getting into lengthy discussions about your disabilities with any strangers. If you find yourself bamboozled into brainstorming, then pause, add the words, "it's a long story", and stop talking. If you insist on conversing, then better to let him ask a long question (or to kibitz him to ask a long question) to which you are able give a short answer and not to answer a short question requiring a long answer.