Saturday, August 27, 2016

The struggle bus is real.

I must admit that while these last few weeks have gone great, there is one thing that I experienced that I must write about. In my 25 years, I can count on one hand the number of times that my disability has been questioned or I've received looks/comments/judgement from others. And to me, that's not a lot! Many people have experienced this and it's time I talk about it. I know in one of my earlier posts I've discussed looks I've gotten for using my handicap sticker, but this is taking it a step further.

It's no lie that I've struggled over the years accepting my arthritis as a disability. I still have days where I don't like to admit that I have it, but I've come a long way from crying about it because I was angry to writing a blog informing others. I've grown and so has my ability to accept that arthritis is a part of me.

Over the last few weeks, I've gone back a few steps in terms of struggling with whether or not I deserve to have Adele. Everyone I met at training was wonderful, respectful, and amazing, so it's nothing against them or the experience I had with them. But I'd be lying if I didn't say that the first few days were a bit awkward. Now I'm one for always loving the idea of people asking me questions about my arthritis. Go for it! I'd rather you ask than stare....and that's what they did. I appreciate that! I just could not get my brain to turn off though. I wasn't flaring during the training, with the exception of one day in which I did not feel great, so to others I looked like a normal able bodied person working with a service dog. Throughout the week, I received questions from volunteers, people at the mall, and even people after training that I would run into asking if I was training Adele and why I had her. I even had 3 people ask me if she was a seeing eye dog lol! Now, these are simple questions that were not meant in a harmful way, I understand that! But for someone who was already struggling to accept that she deserved this, it made things a bit more difficult.

I made it through the interviews and the paperwork, but no matter how many times I told myself I wouldn't be here if they didn't think I was worth it, it still didn't register. All because I wasn't sick at the time. Which really doesn't make sense. During my on site interview, I was flaring, so they were able to see what it was like for me. For that, I am grateful. It wasn't until this past week when I couldn't bend the fingers in my left wrist and I couldn't fully bend my left knee that I truly felt deserving of Adele. She helped me reach a few things that I had dropped and she turned on the light for me when I sat down and couldn't get back up to do so. I knew before the training and I know now, but I'm not sure what happened in my head during the training. I guess I was the only one doubting myself.

I know this probably doesn't make sense to any of you, but if you've ever had to defend the fact that you have a disability, you know that the hardest one to believe it, is you. I've had it 19 years and I still struggle with it! Gotta love having an invisible disability lol!

I would love to say it was just me going through this, but another man in my training experienced it as well. He actually gave me the idea for this blog post. He came into class one afternoon and said, "you'll never believe what a volunteer just said to me". He went on to tell me that she said he didn't look like he needed a dog. I was shocked. She didn't mean any harm by it, it was just the way she said it. I asked him what he said back to her and he said he was blindsided so he just briefly said that he was here because he needed help. I think he may have mentioned his disability to her before he got up and walked off. He said that we needed to have go to responses for people who say comments like that! I thought it was a great idea! So here are 5 go to's that we talked about and that are actually pretty common...

Things not to say to someone with an invisible disability and how to respond to those who say those things:

1. "But you don't look sick"
Thank you, I am very grateful that I've been able to remain active by taking my medication and continuing to exercise to keep mobility in my joints. I have my good days and my bad days!

(You never want to get an attitude with your responses because it can turn the other person off to anything you say. So try your hardest not to give a sarcastic response!)

2. "So have you tried ____, it really helped my great aunt's ex husbands brother?"
I have, thank you for suggesting that.

(literally leave it at that. Or a "No, I have not! I'll have to look into it". Simple answers with this one or they will go into every detail about it, where to find it, and how much it helped their relative)

3. "Were you just faking sick, or do you really have a disability?"
Nope, nope, I really have a disability.

(this one is tough for me because I've been asked it before and I lost my temper. It happened in high school after coming back from months off and my ex's best friend said this to me and I think I responded, "were you dropped on your head as a baby, or are you just this ignorant". I don't think I've ever been that upset before. I've grown up a lot since then, but that was one of those moments that if you're blindsided, you can react in a way that you wouldn't normally react. So just keep the answer short and sweet...oh and know that it has been asked before!)

4. "Wow, you're not old enough for that"
Yeah, I was diagnosed at 6. There are actually 300,000 kids diagnosed with JIA every year.

(By throwing in a fact or important detail, it allows the person the chance to not only learn something new, but it takes away the chance for them to question your credibility...yes people actually do that)

5. "Why do you need that handicap sticker/service dog?"
Well, I have a disability that requires me to need assistance and by having these things, it helps me.

(Technically if a business is asking you about your service dog, they can only ask if she is one and what kinds of commands does she do. Most people aren't this blunt and won't ask the question this way because it's rude....but it does happen. This is also one of those moments where you want to give a sarcastic answer, like why do you need that extra slice of cake...but don't give in!)

Now always remember that it's not what you ask, it's how you ask it. I know that the majority of people I talk to are innocently asking because they don't know and would like to learn more. And I'm always very open and kind in the way I respond. So just be mindful of how you ask and answer the questions. Nearly all of the above can be asked in a nice way or you can change up the sentence and it can have a completely different meaning.

And when you want to know, always ask! :)

Next stop on the struggle bus: School's back!

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