Don’t EVER tell me that I shouldn’t raise awareness for a disease because “It’s not that bad, there are worse diseases.” Don’t tell me “It’s just a stomach ache, it’s just joint pain.”
ALL diseases deserve awareness. They effect us all the same.
Whether it’s Cancer, asthma, IBD. Lupus, Ehlers danlos syndrome, CFS, diabetes, or Cystic Fibrosis, and the thousands of other diseases. They are all illnesses that affect our daily lives.
There will always be someone who has it worse. Always. But that doesn’t mean the pain we feel is not real, or less important. When you compare these illnesses, you minimize what someone goes through. Don’t minimize the pain of others, because unless you have gone through it you can’t judge it. You don’t know what it’s like.
this is going to be one of the most personal things i’ve posted in awhile. So, today is #noshameday , which is a day to acknowledge those in the disabled community, because unfortunately, we go unheard and unnoticed a lot of the time.
My name’s Danyelle, I’m currently 18 and I have irritable bowel syndrome, non-alcoholic fatty liver disease, scoliosis, scheuermanns disease, type 2 diabetes, hypothyroidism, hidradenitis suppurativia, asthma, + polycystic ovarian syndrome. Quite a mouthful, huh? Not really sure how to go about this post so please bear with me!
visible disabilities :
We discovered all this lovely stuff around the time I was 8. it started with the discoloration you see in my armpit. We thought it was a rash, but it actually has to do with being insulin resistant. (ties in with my type 2 diabetes) the discoloration is in my groin, and around the back of my neck. It feels very odd to purposely be posting a picture of it because in all my other selfies I try SO hard to hide it. Summer is always full of anxiety because of it. When I was in elementary school, Kids used to think it was dirt and make fun of me. The other thing, if you haven’t noticed, is there is a huge scar across my armpit (its on the other one too) I have a skin disease called HS and the flares you get from those almost resemble a boil but under the skin. I’ve been dealing with that since I was 11. At the age of 16 I had to have surgery on my armpits to remove all of them. I won’t go in to detail but the recovery process after the surgery was brutal. Let’s just say it had to heal with open stitches. I had literal hoes in my arm pits. Yeah, good times.
The third picture is to show the disfigurement of my back. I have scoliosis and scheuermann’s. Scoliosis is curves of the spine. I have two, one is 39 degrees, and the one in the lower lumbar area is 20 degrees. Scheuermann’s is another form of disfigurement. Its really hard to explain, Here’s a quote from wikipedia. – “
Scheuermann’s disease describes a condition where the vertebrae grow unevenly with respect to the sagittal plane; that is, the posterior angle is often greater than the anterior. This uneven growth results in the signature “wedging” shape of the vertebrae
“ Living with these two things have caused me so many problems. I am in pain constantly. And trying to find clothes can be almost impossible. I can only where sports bras because I can not find a “regular” bra with a big enough band to accommodate my curve. Dress shopping for school dances or anything was hell. It’s little things like that which make me feel “not normal”. And once again, I can’t believe I’m posting a picture of my back on purpose, because I always try to hide my back and posture in photos.
when I was around 13 I had a colonoscopy to try and determine why the hell my stomach was giving me so much trouble. I was diagnosed with Irritable bowel syndrome. IBS ruined my schooling. I missed half the year, EVERY YEAR in middle school. In high school I decided to just get my GED because It was too much for me, and the school did NOT accommodate me as they should have. They thought I was lying, exaggerating, just didnt feel like going to class. IBS is something you deal with every day. Granted, some days are better than others but its constantly in the back of your mind.
Depression, and anxiety had also started to take over my life around the time I left school, which as most of you guys know from my blog, I still struggle with mental illness to this day.
Around the time they found the discoloration of my skin, someone decided we should do blood work and check everything out. I was diagnosed with non-alcoholic fatty liver disease. I had a liver biopsy to get more information. We then found out my liver enzymes were high enough that I was looking at a future liver transplant. Which luckily never happened because I managed to get it under control, but that took years. no one I knew my age had these “problems.” I couldn’t relate to other kids. We also found out from the results of that blood work that my thyroid was barely functioning, aka hypothyroidism. and to top it off I had been officially diagnosed with type 2 diabetes. My blood sugar was and is all over the place. My doctors want to put me on insulin but are actually giving me one more shot (no pun intended) to try and get my blood sugar down on my own. I am slightly terrified.
at 14 I was told I had polycystic ovary syndrome. I hadn’t had a period before, and once again they did bloodwork, and found out I have a hormone imbalance- too many male hormones. Which causes facial hair (I’m very lucky that I don’t have this any worse than I do.) and that explains why I don’t have regular periods. When I do get a period, it feels like I’m being attacked from the inside. Almost like my body doesn’t understand what the hells going on.
,After going to the emergency room 5 times for a nebulizer they diagnosed me with asthma
decided to prescribe an inhaler- finally.
and last but not least the reasoning behind the medicine picture
This was to put it into a visual. All of it. I take so many medicines every single day. It’s taken me years to accept that I need medicine to basically function, and thats okay. I am so proud of myself for coming this far. It has been anything but easy. I have to constantly remind myself that I am beautiful.That I can still be unproportioned, have discoloration, and multiple other things- and still be beautiful. My disabilities don’t make me any less.
I don’t talk about them as often as I should. I have so many friends who don’t even know all of this about me. Without meaning to, I hide my disabilities as often as possible. That is what we are taught in society. Well, fuck that.
Here’s to every single one of you that has been made to feel like a burden, who have been constantly told if you just lose weight everything will be fixed,, who has dealt with the school and been treated like shit. To those who can’t get out of bed most of the time, and to those who still try too. You’re all my fucking hero’s.
Another name for someone with a chronic illness is, light seeker. Because that’s all we do. We look for the light in the darkness. The light at the end of the tunnel. The north star, anything. Anything to give us the faith to keep going. The hope, it will get better.
The thyroid hormone helps a lot of important parts of your body work properly. When it is not working properly it can mess with your:
If you have symptoms in these areas it’s worth having these simple blood tests to find out if your thyroid is to blame. Ask your doctor to test your TSH, Free T3, Free T4 and thyroid antibodies.
Then, don’t stop there. Look at your test results. If your Free T3 and T4 are in the lower half of the reference range and you have symptoms then you are hypothyroid (although most doctors will not treat you until they fall below the “normal” reference range). If your Frees are above the reference range you are hyperthyroid. Presence of thyroid antibodies will let you know if you have Graves Disease or Hashimotos.