19 Jan But You Don’t Look Disabled
A few months ago, I wrote about how I had applied for the Canadian Disability Tax Credit here in Canada, which, when approved, comes with some tax benefits. If you remember, I had quite a time trying to get approved, but, eventually, after going through the process of re-applying, rewriting applications, bugging my GI doc to fill out some extra forms, I was finally granted disability status in Canada.
Yes. In Canada, I am considered disabled.
And yes, I know I don’t look it.
According to the Canadian Government’s definition of disabled, I do, in fact, fall under that category. My ostomy makes being alive very different and more complex than non-disabled people. Though I’ve had it for almost 12 years and it is part of who I am, it still has its ways of being a pain. The extra time, cost, and complexity of my ostomy qualifies me as being disabled.
And it doesn’t matter that I don’t look it.
One of the benefits of having the tax credit is that I am able to open up a special savings account. As everything is when it comes to government, it’s a process to get it set up and comes with many stipulations and rules. Before I set up this savings account, I wanted to do my research, so, I went from bank to bank, talking to their employees, asking the questions I needed answered.
And from bank to bank, I would get the exact same thing:
“Hi, I’d like to talk to someone about opening an RDSP here at your bank.” I would ask.
“Ok, I can find someone for you to speak with. Who did you say this is for, again?” They would say.
“It’s for me.”
“A Registered Disability Savings Plan is for you.”
“You know you have to be approved for it, right?”
“Have you been approved?”
“Ok… let me just get someone for you…”
And off they’d go, walking a few steps, then looking back to get a good look at me in my skinny jeans and high heals, and wondering if I was just some idiot.
Eventually, I found the bank I wanted to open the account with (not from the help I was getting, but from the investments…) and I went to set it up.
I went to the teller, and said the same thing I did time and time again – I wanted to open an RDSP. After witnessing another round of confusion and hesitation, I was eventually taken to an employee who could set it up. It was only after a quick introduction that it went straight into the usual:
“This RDSP is for.. you?” he asked.
“Yes.” I responded.
“Disability Saving Plans, right?”
“With a D.”
“Yes. I’ve been approved for it. I know how much money I can put in. I know the rules about taking money out. I just need someone to set it up for me.”
“You seem like you know a lot more about this than I do.”
“Well, I’m not mentality disabled!”
Eventually, I started giggling out of frustration and exhaustion and just wanting to have the whole thing finally done with. The banker, recognizing that I was laughing at my own inappropriate joke, relaxed into the conversation and we were finally able to get it done.
Not a single part of me was surprised by the confusion and questioning I experienced during this process. In fact, I expected it.
But why did I expect it? Why was it ok for me to accept that others couldn’t accept that I’m considered disabled? Why was it ok for the employees to question me in this way? Even further, why was it ok for them to speak to me like I have the IQ of a 5 year-old?
Well, you all already know that I’m not someone who cares about what anyone thinks of me. But what if I did? What if I was someone who could be offended by something like this? Would you have been?
For those of us with Crohn’s, Colitis, ostomies, and other chronic illnesses, we’ve heard it before:
“Well, you don’t look sick.”
No, on the outside, we don’t look sick. In fact, on the outside we look like strong, beautiful people.
Because we are.
But on the inside?
Some of us are in pain, some of us can’t sleep, can’t eat, can’t move, can’t muster up the courage to hang out with friends.
On the inside, we’re not ok.
This is a picture of me that was taken last weekend:
I was having stomach pain when this picture was taken.
I have been on clear fluids and soft foods all week.
While I know my mother is going to read this and call me and yell at me for not telling her sooner – she saw me this past Friday and couldn’t tell.
Most of the time, you can’t tell.
And none of you would be able to tell if I hadn’t opened up about it.
This is why it is so important that all of us speak out.
It’s important that we teach. It’s important that we help the public understand that there is a lot more than what’s on the surface when it comes to our health. This is why I am always talking about what I have, to remind people that you can’t judge a book by it’s cover.
And you can too.
Whether you take time to explain it to a few family members, or a group of friends, or you open up about what you have to an entire auditorium of people –
We all have a reason to talk about what we have.
Without us speaking out, we will continue to be judged by our appearance and not understood by what we’re going through. We will continue to be scrutinized for having to leave school early, for missing a day of work, for not being able to wear a certain pair of pants, or for not being able to share a certain dish at a restaurant. Without educating those around us about what we’re going through, they’ll never learn.
Because they can’t see it for themselves.
Friends and followers – I have some exciting things coming in the next little while for Uncover Ostomy that I want all of you to be a part of. While I can’t divulge many of the details yet, there is a way you can be involved.
Over the next few weeks, you can educate. Over the next few weeks, I want to see you share.
I want to know why you talk about your #ostomy.
Tweet to @UncoverOstomy, post on our Facebook page, and use #ostomy on an Instagram post.
Tell me why you open up. Whether it is to just a few people or hundreds of people over, I want to see your reason. I want to know why you have joined our cause.
Soon, you’ll get see why….
No, we may not look disabled on the outside, but that’s only because the strength that comes from dealing with our diseases is what shines through most.
Tabitha StecklePosted at 23:16h, 19 January
Hi there! I have had Crohn’s disease for 21 years and have underwent a total of 4 surgeries. They have included an appendectomy (pre-diagnosis), defunctioning loop ileostomy, total colectomy and lastly a bowel resection and relocation of my stoma (end ileostomy). I just recently discovered that I could apply for the disability tax credit as well. It was a lot of work but totally worth it. If you feel overwhelmed there is a company called the National Benefit Authority that can assist you in getting the credit you are entitled to…..of course that comes with a cost which I believe was 30% of whatever you collected from Revenue Canada. This also something you can do with the help of an accountant who files your taxes. I was also approved after completing the required paperwork by myself and medical professionals. I was excited to find out that they would retroactive pay me back 10 years from application completion and have been approved until 2017……so they deposited a lump sum in to my account once my application was approved and then every year when I file my taxes I will get the refund! It is totally worth the time and effort to look in to. After 16 years……I can only imagine how much money I have spent on ostomy supplies. I agree that I also get told that I “don’t fit the chronic illness or disability image” as well and it is frustrating as many would have no idea what it means to function as we do on a daily basis.
VernPosted at 23:43h, 20 January
thanks for this. great read. I’m trying for it this year….after 26 years of Crohn’s
TitaPosted at 12:27h, 22 January
I don’t have an ostomy but I do have UC and I don’t mind talking about it. I think that all of my coworkers know about it – I told them when I returned to work after a 3-month absence due to my first flare. They have never seen me at my worst because we had a holiday when I was admitted to hospital. They have not seen me being barely able to take out the rubbish because I had no energy. I look fine at the moment but I have been battling an slight flare since the middle of November, so they are surprised when I tell them that because on the outside I look fine. I don’t hold it against them because I know that just as I look fine on the outside, there might be someone else who looks fine on the outside but is struggling on the inside. I know that if I didn’t have this disease, I would probably also tell someone that they look fine and it wouldn’t be as a way of telling them that then they surely must be healthy, but it would be said to convey my surprise. We often associate looking terribly with illness – even when we “only” have a cold or the flue, we can see this on the outside (stuffy or runny nose, watery eyes, sore throat), so we assume that it has to be the same with all illnesses.
Oh, I hope you are feeling better!
TitaPosted at 12:33h, 22 January
Ah, forgot to say this:
I don’t think we should be ashamed of this disease – it’s not like we asked for it, or that we would want to have it. Sure, some symptoms are a bit more unpleasant to talk about, but It’s not like we are doing something that others would have the right to look down on us like selling drugs to children or something like that. 🙂
Yoni treibatchPosted at 13:49h, 22 January
Does anyone know if the United States has similar tax benefits for people with Crohn’s/Colitis?
Jennifer TaglionePosted at 17:21h, 23 January
Jess, this is so beautifully written. I’m so sorry to hear about your struggles. I just wanted to let you know your story also touches so many others. I have lupus and was approved for American disability in 2013. It’s so hard to explain what my Body puts me through on the inside and how hard it is to maintain the facade of feeling ok.
Thank you so much for sharing and inspiring me to be more upfront and honest with everyone I meet about my disability.
SarahPosted at 20:19h, 23 January
Thank you so much for sharing your story! Being vulnerable and sharing exactly what people have said to you and how they’ve treated you is hard. (Also, the GIFs are hilarious).
Your clothes shouldn’t have to match your pain level. It is infuriating that when I dress for myself (nicely) that people can confuse your appearance with how I feel inside. In fact, it seems like the longer that I’ve been sick, the better I’ve gotten at masking it. Yet, if I do dress in a way that matches with someone’s perception of sick, they don’t treat me with dignity or treat me seriously.
CarriePosted at 23:28h, 02 February
That moment bothered me too. Though I loved the rest of the article. My son has Down syndrome and is the most beautiful, lovable, sweet and funny 7 year old I know. You really missed the boat not applying your entire argument to those with other disabilities. Respect. 🙂
Lissette GojePosted at 18:20h, 27 March
I have had Crohn’s Disease for 21 years and an ostomy for 14years, this July! The best decision I have ever made. Nothing is perfect, from the moment I had my entire colon removed to my last surgery due to fistulas, it has been ten surgeries altogether! With the pain, surgeries, set backs (I have eight feet of my small intestine left resulting in small bowel disease as well)… I’ve had many more positives! I went to college and finished with three degrees, met a wonderful man, who accepted me as well as my “Rosie” (ostomy), married me and made me a happy bride and gave me something that I wanted yet didn’t know… My princess munchkin! My life has ups and downs like every other Chronie, but when I look at all the good things that Crohn’s disease has given me (no bullshitters; just people who accept me and love me and Rosie), it has been worth the struggles! Hope every one finds what works for them! God bless you all…
MimemePosted at 20:13h, 24 February
In the USA a person who has a stomach not considered to be disabled. I knowing the UK you are automatically considered disabled. I had emergency surgery due to a perforated colon due to being on humira & methotrexate for years. I was on them to help me with my psoriasis & psoriatic arthritis, I was not feeling well about 2 yrs ago but the doctors wouldn’t listen saying it is probably stomach flu. My husband rushed me to the hospital because I couldn’t keep anything down. I went through 1 stoma surgery but within a week they were rushing me to the operating room for a 2nd stoma surgery this time though I was having a hard time after surgery to The point they thought I was not going to make it. I spent over 3 months in the hospital & over 2 months recovery at home. I went back to work & I was told by the surgeon that the reversable surgery they could not tell me whether or not it would work so I told them I would stay with my stoma I will not put myself through that surgery again. I know my life is not ever going to be normal again but I am still able to be here with my family & loving it.