A Guest Post by Connie Stephany
Normal (Adjective): usual or standard
What does that word really mean? I think everyone’s definition is likely quite different.
For me, normal was growing up having my shoulder come out of socket in a swim meet and then being able to only swim with one arm. I was sick constantly, missing school and picking up every single illness possible.
Later in my life, normal meant taking longer than “usual” to recover from c-sections and having no explanation why. It was having constant body aches and headaches. It was having me cry or scream when someone touched me the wrong way. How do you explain to your 3-year-old that it hurts to have them sit on your lap?
I suffered in silence. I thought everyone dealt with those things. Right?
It wasn’t until a couple years ago when I found out that what was happening to me was anything but normal. I kept getting worse as time went on, to the point where I’d push myself each day and then come home from work and have absolutely nothing left to give to my family. My husband and my children worried about me when I’d come home and want to go to bed at 6:00pm each night.
I liken it to having influenza, where you have horrible body aches and pains so bad that you can’t get out of bed and all you want to do is sleep. But unlike the flu, it’s chronic and will never go away, so you can’t just stay home from work and sleep it off. No, instead you’d have to push yourself to keep going.
To add insult to injury, some people would tell me “you don’t look sick”. Some didn’t believe me and think I was exaggerating or a hypochondriac, even doctors. Other people would tell me just to change my diet and push myself to exercise and that will make me better.
Have YOU ever tried to exercise when you had the flu? Give it a try. Go on, you can do it! No?
After years of doctor visits, tests, physical therapy, specialists, multiple diagnoses, and trying drugs that never really helped, I went to a geneticist.I was diagnosed with Ehlers-Danlos Syndrome (EDS), the hypermobility type. EDS, which has six different types, is a genetic defect in connective tissue. This tissue provides support to many body parts such as the skin, muscles, and ligaments. EDS comes with fragile skin and unstable joints as a result of faulty or reduced amounts of collagen, which is the “glue” that holds your body together.
Symptoms are not fun. I suffer from joint dislocations, easily bruised and torn skin, horrible body aches, headaches, chronic, debilitating fatigue, anxiety and irritable bowel syndrome. That’s just to name a few symptoms.
Fast forward to a couple of years later….
There is no cure, but I’m learning to deal with my pain and other symptoms.
I will not let EDS win.
My three children and sister have been diagnosed EDS. My oldest daughter has already had surgery on her shoulder, gets sick with every single virus that comes her way and deals with similar body aches and anxiety. My son gets frequent headaches and body aches and some days he just can’t get out of bed. My youngest daughter isn’t showing signs yet and I hope she stay’s symptom-free.
I feel lucky. I took a medical leave to attempt to get my symptoms better controlled. I still have a very full life and I never let this stop me for very long, but it means I have to limit myself. I’ve learned to set boundaries, listen to my body for when I need to rest, and I’m trying many natural remedies.
I’m now more knowledgeable so I can help my children deal with this debilitating chronic illness proactively. I will continue to look for ways to help me and the others in my family who suffer from EDS live a full, pain-free life. I’m extremely thankful for my very supportive husband as well as friends and family. I couldn’t keep going without those who love me.
My sister is not so lucky. Her husband gave up on her. She is so severely sick she is on long-term disability. She is still looking for answers from doctors while taking care of her 4 year old. But she is very strong and will not give up. She will get better. I am 100% sure of it because she is so strong.
If there is ONE thing I’d like people to take away from this story, it’s this:
For those who are unable to understand because you’ve never experienced anything similar, I pray you never learn the hard way. However, I do hope you can find it in yourself to try to understand and be more sympathetic to those who are suffering, even if they don’t look sick. I’ll never give up, and I’ll always fight for my children and sister.
Thank you for taking the time to read my story.
Connie Stephany has a husband of 16 years, three children, a dog and a bearded dragon. She is a writer and a Solution Architect. She published her first book, Second Chances, in 2014. Her second novel, Third Strike, is due out in 2016. Life is busy, crazy busy. Kids in sports, work, writing and just keeping up with her husband and children keep her very busy.
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