My Invisibility Rant

I've been scrolling through my Pintrest, and there's a lot of pins about awareness for 'invisible' diseases like fibromyalgia, lupus, or arthritis. And that got me thinking. Why does someone need to be outwardly ill looking for us to be considered sick? My aunt had rheumatoid arthritis, and went undiagnosed for almost 15 years. You can see the havoc it has wreaked on her hands and feet. It's more visible than other diseases or sicknesses. On the other hand, my dad and I both have what would be considered invisible diseases. My dad has been sick his whole life. At age 54, they still can't tell him exactly what he has, what caused it, or what will fix it. Because they don't know. This is going on about 13 years of doctors, medication, testing, monitoring and whatever else. And still we don't have a firm diagnosis. All they can tell us is that his blood pressure and volume is low, and the main arteries to his heart have a habit of shutting off and depriving the heart of blood, which causes black outs, and potentially strokes or heart attacks. The testing in the last bit has become more intense, and we're hoping that there's an answer coming. But to look at him, you wouldn't have a clue that he deals with this every single day. You wouldn't know that at any given time his body can shut down and possibly kill him. We don't know either, and that's the scary part. It's taken a toll on him, my mom, my brother and I, on my parents marriage, and other relationships around them.
I guess in some ways I might be considered luckier. I have a diagnosis. I know what is wrong with me, and I know what to expect, and what I can and can't do. What I don't have, and never will have is treatment or a cure. I was about 23 when I was diagnosed with Ehler Danlos Syndrome type 3. Basically, it's a hypermobility disorder, that can affect your joints, heart, and cause other problems. I had been having knee pain for a while, and I was sent to physio for it. My therapist is the one who sent a recommendation to my doctor about it. She diagnosed me. Done. Until I researched it. Looking at it, it really isn't the most horrible thing to have. There are far worse, and more lethal, type I could have, and I think I definitely caught a break on this. Right now, I'm in the middle of testing for osteo-arthritis and rheumatoid arthritis because the joint pain is beginning to affect my life. I just finished blood work, xrays, and on June 17 I'll be going for an MRI. Once a year I have an ECG done to check the collagen around my heart and make sure it isn't depleting. I also need to e more aware of myself everyday. This disease (syndrome, sickness?) causes the joints to become hypermobile and sublex more easily. AKA, I'm double jointed in almost every joint in my body. And as much as fun as it sounds like, it isn't. In two years, it's gotten to the point I can't sit on the floor and play with my kids anymore, because my hips and knees lock and I'm unable to move. I can't give piggy back rides or shoulder rides because my hips and knees have a tendency to give out and cause me to fall. Sleeping is becoming more and more difficult because I can't get comfortable. Less sleep means I'm crankier with the kids than I want to be. In reality, it isn't the worst thing to have. But there are days it seems like it's consuming me, and my life. But to look at me? I look like a healthy, normal, slightly tired, mother and wife. Inside, it's a vicious fight to see what syndrome or illness is going to be dominant that day. No one sees it. My mother thinks I over exaggerate and use it as a poor me excuse. My mother in law thinks I'm a flat out liar and that I'm faking everything. Yes. Because I fucking love hospitals and doctors and all that SO FUCKING MUCH. Ugh. But that's my point right there. They can't see what's wrong, or the pain, so they assume it isn't real. But it is. It doesn't matter if it's something small, or something huge. There's millions of people out there with 'hidden' or 'invisible' illnesses. Don't write them off and assume they're lazy, or faking it.   These aren't fake, and they are hurting the person who has them, and people who are close to them.