The Invisible Disability Dilemma

I know there are a lot of mothers and fathers who have medical issues and are just trying to do their best everyday not to let it stop them from doing all they can with their children. I am one of those mothers. I have many medical conditions (listed below). Some will prevent me from doing certain things and others will only limit me. Most of the time, I'm not all that affected by these things. I always have some sort of pain, but I've lived with it for so long that complaining is not an option. No one wants to here me say that my legs hurt, or my neck hurts, or that I'm cold. So I reserve the complaining for when the pain is really out of control. 

Taken from www.disabled-world.com

I guess that's the dilemma of people who have medical conditions you can't always see. The dilemma of people thinking you are just a complainer. If they can't see you're sick, then you're not. Most of my medical conditions are not visible, at least not to the average person, and when I see a doctor and go down my list of medical conditions, I always get a look from them like I'm crazy. Then they want to run all these tests to, what? Make sure I'm not lying? Uh, I know I have all of these things because I've had all different kinds of tests done. I'm not making this stuff up!

A while back, my mom gave me the courage to ask my lymphedema therapist to fill out the paperwork to receive a NYS handicap parking permit. I was working at the time, before I had kids, and the parking lot at my job was so big by the time I got into the building I was in pain and my legs swollen. So I now have my "handy" which I like to call it. It is very handy. Especially on those days I am in pain and don't or can't walk for too long. Sometimes, people can be really rude though. They think because I don't use a walker or a wheelchair and because I am usually toting around three kids, I am lying about needing a handicap parking permit. I get looks all the time and it makes me feel like I need to "act" more disabled. The sad part is that if I didn't have my "handy" and had to walk across a long parking lot, I would be walking like I was more visibly disabled. So, I just ignore and thank my mom for pushing me to be not embarrassed by asking my doctor for the referral. If there wasn't a need for me to have one, she would've said no and the state would've denied me. So f*ck the snide remarks and rude ass people!

Anyway...

Let's go down my list:

• Primary Lymphedema (Meige disease, lymphedema praecox) is not understood as a disability - people just think I have cankles or fat legs. It affects both my legs from hips to toes. The swelling and pain is very real. It took many doctors and about seventeen years to diagnose. It started showing it's ugly head when I was around thirteen but didn't think too much about it until a doctor said I had swelling and couldn't understand why at my age. Even though doctors knew I shouldn't have swelling, none of them took the time to actually figure out why. Then I started feeling pain with it and I took it upon myself to find a doctor who could possibly tell me the reason. A rheumatoid doctor actually told me it might have to do with my lymphatic system and gave me the number to Lymphedema Therapy in Woodbury, NY, the place I have been going to since 2007 for treatment. This is a hereditary disease so there is a 50% chance I have passed it down to one or more of my children. I hope not, but if they do have it, I will know what to look for so they will not face years and years of being in the dark about it like I was. It's worse not knowing what is wrong than having an answer - even if that answer is a non-curable one.

• Raynaud's Disease. My fingers and feet turn purple, red, white, and are very cold. The cold literally hurts me. I get odd looks or laughter from that, but it is NOT funny. It actually is painful. When there is a cold breeze or wind, it actually feels like sharp needles and knives are scratching against my skin. This is the reason why I almost always dress in layers and sit with my hands tucked closely to my body. Even with the warmest socks and boots on, my feet never get warm.

• Temporomandibular joint (TMJ) syndrome. My jaw dislocates and locks up. It is extremely painful. After it unlocks, the soreness can last days. I usually always have symptoms whenever I'm stressed or under pressure. With three kids, I'm surprised I don't get it more often!

• I have neck issues such as degenerative disk disease, compression fractures, bulging disks, herniated disks, cervical kyphosis, a hemangioma on my spine by my neck, and a nodule on my thyroid. For most of these things I blame a bad car accident I was in about sixteen years ago. Sometimes my neck hurts so much I can't move it. I always feel some kind of pain in my neck and upper shoulders.

• Chondromalacia Patella (or patellofemoral pain syndrome). I have this in both knees and when I sit for too long, or walk for too long, or go up and down stairs, it gets to be painful. I won't even be able to ride a bicycle w/ my kids b/c my knees lock up & pop & then I can't walk. That makes me sad :(

• Benign paroxysmal positional vertigo (BPPV). I haven't had an episode in about two years, although I sometimes feel like I will have one every once in a while, especially when I get a cold. When I feel like I'm getting dizzy, I have to remain very still then move very slowly to make sure I don't get full on vertigo. If I continue to move at regular pace, I know I would get it. It's a horrible feeling. I can't do anything when I get it and it lasts for days. It lasted over a week once and I thought it would never go away! I've had MRI's done to figure out why I get it. The doctor's think it might be caused by the car accident I had about sixteen years ago, and all my neck issues. In office treatment (head maneuvers) didn't work for me so I take a medication called meclizine when I have an episode. It helps a little until the symptoms go away completely.

• Polycystic Ovary Syndrome (PCOS). I have irregular menstrual cycles and get cysts in my ovaries. This was one of the causes for my two miscarriages and all my fertility issues. Luckily, with todays advancements in reproductive medicine, I had an amazing doctor who treated me so I was able to get pregnant with Lily (through Intrauterine Insemination - IUI) and our twins, Killian and Piper (through In Vitro Fertilization - IVF). Unfortunately, there is a 50% chance I passed on the PCOS gene to Lily and/or Piper. I pray they don't have similar infertility issues as I did/do. Hopefully they don't have PCOS.

• Fibromyalgia. If everything else wasn't enough on it's own, I was diagnosed with fibromyalgia back in 2011. It's hard to diagnose, but with all my other medical issues and them checking tender points on my body, the doctors were confident in their findings.

So, is that enough for one person or what? It's enough for me. I know there are people who have worse things wrong, like my youngest sister who has Crohn's Disease and Behcet's Disease, PCOS, a benign cyst on her brain, and an unruptured brain aneurysm. Like me, she may not "look" sick, but when she's in and out of the hospital, there's no denying she's not making anything up!

Now, the next time you see someone who may look completely healthy, just remember, they may not be. Don't ever judge someone by the way they appear to be in public because when they are alone, they may be hurting.