Living with an Invisible Disability

"Seeing isn't believing, believing is seeing." - Little Elf Judy

I look normal, that means I am normal. To most people today that is the general idea. What is on the outside must reflect the inside. In my case, I can tell you that I've come into contact with a lot of people who don't believe me when I show them the medical alert bracelet I wear or when I tell them that I can't partake in something because I know that it will instantly stimulate my heart rate. My favorite is when I say, "No thank you I'm a diabetic."

And then they look me up and down, give me a confused look and say, "You don't look like a diabetic" or "Are you sure?"

To which I want to scream and reply that, "Yes I am sure and having diabetes doesn't mean that I have to be overweight or that there is something visually wrong with me. Last time I checked, you can't see my pancreas by just looking at my stomach!" But instead, I smile and educate them on MODY or if they are really annoying me I say something smart like, "Thanks for the compliment! I had lap-band surgery two days ago, who knew it would work so well!" and walk away.

People don't understand the concept of something being different than the norm, and to them the norm is themselves. I often find myself as an outsider because I don't have many people beyond my family that have the same diseases as I do. Because of this, I often find myself sitting at home reading a book because I simply don't have the energy to explain to someone why I can't participate in something or why I always have food on me and no you cannot have some. Although sometimes alone time is nice, and in my case a necessity for survival, it is no way to actually live.

1. Find people that you trust!

I have learned that the people I decide to do things with matter when it comes to my health. If I want to have fun and be care-free, I need to know that if I do need help, I can get it. The friends I have surrounded myself with are amazing and uplifting. I made connections and then told them what my daily life looks like. I was very clear to them that I have these health concerns and that if we are going out they need to be aware that I have limitations.

When you are around people you trust, your health will also be affected! Laughter is the best medicine and in this case I couldn't agree more. For me, my alone time is a necessity to recharge, but I also know that I feel better after being with friends. I also know that a distraction from the struggle and pain of my disabilities is always welcome.

2. Educate!

Educating other people has now become a full-time job, welcome to the club. There is not a day that goes by where I'm not teaching someone about what I have, because let's be real, not many people know about POTS and MODY. If people genuinely are asking questions or if someone in your life needs to know about your health, educate them! If they are being a jerk and are only taking in the information to poke fun or make assumptions, either give them the short version and be done, or just walk away cause honey they are not worth your time.

Educate yourself as well. Do some research to know what is actually happening in your body. The human body is so interesting and beautifully woven, take the time to learn about how you were made. This may even lead to knew treatments to mention to your doctor or new coping mechanisms to try. You also need to be educated yourself if you are going to educate other people!

3. Seek help, but don't make your disability their's!

I had a friend once tell me, "Sometimes I forget you're a diabetic." As I said before, have people you can trust! For me, that's my friends. I made them aware of my situation and I told them if I needed help I would ask for it. I explained any emergency situations and what I would need if they were to happen. For example, I told them that if I ever faint in front of them to get my meter and check my sugar levels. If I'm low get me that sugar! But I also told them that if my sugar is fine, to check my heart rate. If I don't wake up after a minute (which is the longest I've ever been out) then seek emergency help. I also told them that if I tell them I need help, it is not something to be taken lightly. I like to take care of myself and deal with my problems alone, so when I ask for help, they should be worried because I have a problem.

There are many times that I have fainted and told them later because I knew it wasn't dire. If you are going to actually live a life you cannot constantly be dwelling on it and worrying about the next time you have a flare up, and neither can your friends. Don't make them feel like they have to take care of you. I'm not advocating for you to completely take care of yourself, because there are situations that require assistance from other people. But if you are constantly requiring your friends to take care of you, it will get to a point where they won't see you as a friend, instead, you will be a burden.

4. Find out what works for you!

In the end, dealing with your disability or struggles in life is down to how you function day-to-day. Finding coping mechanisms and ways to get through the rough days may take some experimenting. For me, when I'm struggling with POTS and I cannot stop shaking, I want a distraction. This may be a movie, book, or just listening to my friends being their goofy selves. But I also know with my dizzy spells that nothing will help me, I just need to put my head down and get through it. I also know that sometimes I need people to help me. These are the worst of the bad days and it can be difficult to see and understand the world around me, but if I stick it out, it will end eventually.

You may be struggling with something different or something similar! However you deal with it is completely up to you, your body handles things a certain way. I know for my sister, it is shutting out the noise of the world and just being alone. Experiment, try different distractions or ask your doctor if they have any ideas. In the end, don't be afraid to just see what works. Yes, this could mean some rough days of experiments that just don't work, but when you find the perfect solution, it will all be worth it!

5. Live, not just survive!

Sometimes you just have to bite the bullet and go out. You cannot let this disease become your life, the moment you do is the moment you stop living. It's like giving up on life, you are doing what it takes to survive but nothing else. Be a human being and have some fun. For me, that looks like going hiking, to the fair, and recently a concert. For me, the concert was a big risk because the last time I was at a concert I had a severe attack, one of the worst I've had in a long time. But I know that I cannot just never go to a concert again, I have to live, not just survive!

Also, and this is not doctor recommended, splurge a little and eat that cookie, just remember to take those meds afterwards. I admit it, I have days that I just need some sugar and I just decide that diabetes is not my master today! I've had people try and tell me what I can and cannot eat and I just look at them and say, "I have meds and if I die you are not invited to my funeral because if I'm going out, I'm going out in a blaze of glory." You are human and you can live like a normal one just for a minute or two.