You encourage me along my own journey…
You ask me questions specifically about my condition…
You ask me how you can help me and how to help others who you know who also suffer from what we call INVISIBLE DISEASES…
You tell me your stories... YOUR STORIES ENCOURAGE ME!
What I have learned, is that there are more of you who have an Invisible Disease than there are those of you who do not.
Recently, I began research on YOU and on YOUR STORIES. I started by sending a few friends who I knew had a story to tell an email and I asked them some basic questions. As I began receiving an influx of responses, I realized that I have an entire GROUP of people for whom these questions could be asked. Please read & respond to the following questions:
1. What is the name of your condition?
2. What age were you first diagnosed?
3. How does your diagnosis affect your daily life?
4. Can you describe the pain or most difficult part of living with this condition? (What hurts the most? What does that hurt feel like? etc.)
5. If this project becomes published, can I use your first name? If not, can I use your information with a fictional name?
To be fair, I will answer these questions, too. If you would like more details, feel free to scroll down the right side of my blog and learn more about my journey with chronic pain.
1. What is the name of your condition?
I was first diagnosed with Scoliosis. Years later, I was diagnosed with Chronic Pain Syndrome – due to Scoliosis. After an MRI, I received the diagnosis of Degenerative Disc Disease. The following year, I had a spinal fusion surgery (which made my condition worse) so I received the diagnosis of Failed Back Syndrome – Post Spinal Fusion Surgery. After almost two years of intense pain, I was re-diagnosed with Chronic Pain Syndrome. I am currently in the process of receiving a legal Disability Diagnosis because I am “unable to complete activities of daily living.”
2. What age were you first diagnosed?
Scoliosis = 13 years old
Chronic Pain Syndrome (1st Time) = 19 years old
Degenerative Disc Disease = 28 years old
Failed Back Surgery – Post Spinal Fusion Surgery = 29 years old
Chronic Pain Syndrome (2nd Time) = 30 years old
Disabled = 31 years old
3. How does your diagnosis affect your daily life?
My condition is considered severe. As stated above, the “unable to complete activities of general living” part is entirely true. The most difficult part of my diagnosis that I deal with daily is that I am unable to work. But, the little things that are affected daily are: I need accommodations to do EVERYTHING (sit, stand, walk, exercise, shop, sleep, bathe, do chores – you name it!). I am currently in the state where my disability affects every part of my day…
4. Can you describe the pain or most difficult part of living with this condition? (What hurts the most? What does that hurt feel like? etc.)
It is very difficult to pretend that I have a “normal” life with my condition. I have very specific requirements that I must follow; and if I do not, then I am guaranteed to have pain. My left QL (back) hurts the most; however, because one thing leads to another, I have daily pain in my entire low back; I constantly have a sprained Left Hip, my SI joints are regularly inflamed and hurt and I have slight, daily pain in my neck and right shoulder.
The best way that I describe my pain is this: Have you ever slammed your finger in a door? Do you remember that intense feeling that goes STRAIGHT to your finger? You see red. You also almost “see” the blood rushing to your finger. Then you feel the “Thump…. Thump…. Thump…” in your finger. It’s as if your heart moved from your chest and now lives in that poor, hurt finger. The word “throbbing” does not describe this feeling of pain! THAT is what my back feels like every day…
5. If this project becomes published, can I use your first name? If not, can I use your information with a fictional name?
My name is Stephanie and I have an (actually, many) Invisible Disease(s).
I'm trying to get an idea of what other conditions people I know deal with and how those conditions affect their lives. Please help me by participating in this questionnaire or passing it onto someone you know! You may hit “reply” on your email, email me at: steph2teach@gmail.com or leave your answers in a Comment on this blog. Don’t be afraid to share with me – or others – what your life is like living with an Invisible Disease.
Thanks so much for taking the time to share YOUR story!
Hey Stephanie! My Invisible Disability (I think I typed disease in my last comment to you on accident) is Delayed Sleep Phase Syndrome. I was 28 when I was diagnosed, but was misdiagnosed with Chronic Insomnia as a teen. (Most people with DSPS are mistakenly diagnosed this way.) DSPS is a circadian rhythm disorder- I fall asleep at 3am when most people fall asleep at 10 or 11, and I have to be very disciplined about bedtimes and sleep hygiene.
ReplyDeleteThe way it affects my life depends on how much sleep I get. If I'm tired, I'm cruel to the people I love, I crave carbs and sweets and gain weight, I have to cancel plans, I have a short fuse, my appearance is pretty scary, and it's unsafe for me to drive. I used to use the majority of my sick days at work just to catch up on sleep. It's very hard to write professionally when you are sleepy and even harder to take even the most constructive criticism.
The worst part is the awful way I used to treat my parents, although part of that was probably just from being a teen. Also, knowing that I probably took years off of my life because sleep deprivation is so detrimental to your health. I also struggled with an Ambien addiction for several years that is a MUCH longer subject. But when I'm tired, EVERYTHING is the worst, you know? You have no tenacity and it feels like your world is literally ending.
And sure, if you ever want to use this info or get a prettier-sounding quote from me, I'm all for it!
There is a lot of nice information about invisible disabilities here - http://www.invisibledisabilities.org/ and the wikipedia page has a little info, too.
- Stephanie W.
Thank you so much for being brave enough to share your story, Stephanie! I may be contacting you down the line when it comes to more questions that I have for my book. I will also pray for your healing!
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