When it comes to living with an autoimmune disease that no one really talks about, sometimes you can really feel left in the dust.

Lack of compassion

Recently, we had a little situation with my disease that really showed a lack of compassion for it (I won’t say exactly what happened or with who.) I will say that I feel like we’re missing out on a lot of things that people with this disease deserve. I honestly just feel like this disease needs a little bit more compassion and understanding. When I tell people that I have T1D, it is often taken lightly as “just a small disease that I need to take pills and eat no sugar for”.  I honestly do not blame these people for it at all! We and almost every single Type One Diabetic thought like that before being struck with this disease. If we had more public compassion for this disease, then people would understand that we don’t just take pills and test our sugar levels. I’m going to be honest, I get a little bit hurt emotionally when I see the public attitude as a whole towards all forms of diabetes. In order to change this public attitude, we need more compassion. How do we get compassion? We fight, we put our disease out there, and most importantly: we educate.

Education

One of the biggest things that I see bringing down our ability to change public attitudes is the lack of education. Before diagnosis, I knew almost nothing about T1D! Sure I heard about it, but I had zero knowledge on the subject. The issue here is they hardly teach about T1D and the emotional, physical and social aspects. Had they taught about T1D and the tolls that it has on us, the public attitude would be a lot different. When they talk about different types of diabetes in schools, they usually don’t specify the type. They just call it “Diabetes” as a whole, but not separate types. I feel that this is also a big problem with education because it gives the basic stereotype of all types of diabetes that “you’ll get it if you’re unhealthy”. I remember in health class this year when diabetes came into play, my teacher would often call me up to further elaborate on the subject and educate about my own Type One.

By helping educate people more on diabetes and how it’s not just one disease, we can provide lots of compassion for not only T1D, but also, T2D, Type 1.5 D,  T3D, Gestational Diabetes and all of the other forms of this brutal disease. More education and compassion to help me and all of the other diabetics in the world would be greatly appreciated.

How to help Type Ones

Now for my final segment in this post, here is a few small things that you can do if you know someone with T1D to help them out.

• Don’t assume things about the disease, just ask
  • People often don’t ask things about the disease but, assume things instead. It never hurts our feelings or makes us mad when you ask as long as you’re polite about it! Then we can educate people!
• Give them some space when they are low/high
  • When you are low/high, it can be a little bit annoying when people are clustering you.
• Help them when they are low/high
  • If they are low/high, fetch their insulin or their glucose for them! When you are low/high, it can be difficult to walk
• Understand that the disease can make you forgetful
  • T1D can really make you forget things between managing the disease and everyday responsibilities. You can help us out by reminding us of things or just understanding when we forget every now and then.
• Educate
  • One of the biggest thing that you can do to help every single one of us is to educate people you know about the disease and let them know what this disease is really about.

Now my mom is going to say what she thinks!

Like Joey said earlier, we aren’t going to say exactly what happened recently, but our family was very disappointed in the way a situation was handled by an adult person who should have been leading by example.

It was a very eye-opening experience to witness the lack of compassion that surrounds T1D. While we are blessed and grateful for the outpouring of support that we have received from some family members, friends, educators, medical professionals and our T1D community, we were saddened to find out that not everyone shares our compassion for Joey’s disease and this disease that so many others are fighting.

We have always maintained that T1D is a horrible disease for anyone to live with, but it is especially difficult for children. For the purpose of this post, I will only speak about our experience as a family. Please know that we are aware that the others fighting this disease have their own struggles and we support them in every way.

It was a hard pill to swallow when we realized that Joey is being held to the same standards as those who do not have a disability or disease that prevents them from performing to the standards that others are used to. Since Joey’s diagnosis on October 2, 2017, he has definitely become more forgetful. He needs constant reminding and depends on the adults in his life to look out for him more than ever.

This has become a very difficult transition for our family because we have always held Joey accountable for his actions and lack thereof. We have taught him to be independent, respectful and able to accept responsibility for his decisions.  In his defense, he has had to become more responsible now more than ever before. He literally has a checklist he needs to complete before he leaves for school every day and a regimented routine that he needs to stick to once he is there. And on top of all of it, he has to manage and treat his daily low and high blood sugars which both bring on a slew of symptoms ranging from forgetfulness to weakening of his limbs. And let’s not forget the hormonal changes that are occurring due to the start of puberty.

When the situation came up where Joey forgot to do something on time, we expected a little understanding from the adult in the situation. Clearly, it was out of Joey’s character and we expected the adult person to understand. It became clear to us that our expectations did not match the ability of the adult person, which in turn, took an opportunity away from Joey. We are not trying to relieve Joey of his responsibility in this. We were trying to make the adult person in this situation aware of the cognitive, physical, emotional and social effects T1D has on a person, but he was not hearing it. In fact, it went unheard without an apology.

Joey gracefully moved on an accepted the disrespect for his disability like a champ, but I can not do the same. At that moment, I realized that T1D had taken just one more thing from my son and the lack of understanding and compassion from the adult in the situation made me realize that there will be people that cross Joey’s path who will not acknowledge his disability. They will carry on with business as usual and expect the same performance from him as he had prior to October 2, 2017. They will treat him like the rest and not allow for any mistakes or special circumstances.

At first, this made me sad, but then it made me angry! It made me angry for Joey and for all those kids out there who might not be as strong as him. This adult could have caused Joey to regress, but he didn’t. He made him stronger. He made him more eager to fight and he made him more eager to bring awareness to T1D and all the ways it can affect a person and their regular behavior.

So the message today is this…

Don’t let anyone beat you down!

Use their ignorance and lack of compassion to make you stronger!

Try your best to politely educate, but if it doesn’t work, MOVE ON! They are supposed to learn their lesson a different way.

I would like to praise our son for being so kind, understanding, forgiving, courageous and selfless while he fights T1D and all those who don’t understand it.

YOU ARE MY INSPIRATION AND I LOVE YOU!