My interview with Angela. She talks about her journey living with Ehlers Danlos, Hyperandergic POTS, and Interstitial Cystitis. Please be respectful of her story told in her own words.
What is Ehlers Danlos find out here http://ehlers-danlos.com/what-is-eds/
What is Hyperandergic POTS find out here http://myheart.net/pots-syndrome/types/
What is Interstital Cystitis find out here https://www.niddk.nih.gov/health-information/health-topics/urologic-disease/interstitial-cystitis-painful-bladder-syndrome/Pages/facts.aspx
Where are you from tell me a little bit about yourself… I’m from st. Louis Missouri that’s where I was adopted I don’t know who my biological parents. Finding out my medical history took forever. I was twelve when I started having symptoms and didn’t get diagnosed until I was 37.
What is your name, age, and disease/invisible illness/mental health? My name is Angela Goering, and currently 40 years old living with ehlers-danlos Hyperandnergic POTS and Interstitial cystitis.
When did life change for you? I was twelve when I remember starting to go to the doctor but I was nine when I remember having nightmares, i started trembling, racing of my heart and not knowing why, just feeling like something was wrong.
What was life like before diagnosis? Before the diagnosis had several doctors tell me different things were wrong and give me different medications that never seems to work.it came to a point where I believed everyone thought something was wrong with my head, it was a mental condition, I even started to believe I was crazy. When I finally met my rheumatologist at 37, after I went into atrial fibrillation, I found out I have ehlers-danlos. even though it’s a rare condition and many doctors don’t know what it is I’m just happy to have a diagnosis. I’m not crazy. there is something wrong with me.
How has your diagnosis changed your life? For one thing I now have a diagnosis that gives me a direction therapies I can try. And it gives me a prognosis some patients since we’re all zebras no one really knows or prognosis. It’s made me not take life for granted I’m in pain everyday my pain level is always at 7 on a good day but I try to get out of bed and I try to enjoy it when I can. And I post pictures of my Great Days because I know no one cares about my bad ones, no one’s around for those
Please describe the best you can a day in the life of you? Typically I wake up I take my medication for the morning. I stay in bed and wait for it to kick in possibly putting makeup on my face, watching TV, typically it can take anywhere from 1 to 4 hours to get out of the bed. If I’m up stairs by 3:30 to take care of my children when they get off the bus I’m happy. I like to make them dinner. Go to any school for sports events when needed doctors appointments and physical therapy and in bed or on my recliner all the free times.
What was/is the most challenging thing you have faced because of your diagnosis? Having to use a walker before the age of 40 especially in front of my children
Do you find that you can keep up with others? Some days but definitely not in everyday activities
What would you tell others living with your diagnosis? I’m sorry. I know it feels like no one understands what you’re going through and the doctor seemed uneducated but hopefully you’ll find one that does because one gives you hope. And if you can find a group of people that have your condition that’s the best kind of community to give you the compassion you need to get through this disease. it’s how I make it everyday
What would you like to tell others that don’t live with a similar diagnosis? People see us and think we look healthy because on the outside we do but the inside of us is literally crumbling apart. don’t judge a book by the cover. don’t say well maybe one day we’ll find a cure because our doctors don’t even know what the heck are disease is. we just want people to be compassionate on the days when were in pain and sometimes give us a hug and not say anything at all. just understand that sometimes saying it sucks and I’m sorry that you have to go through this is all we have to hear.
What have you learnt on your journey? Be humble ,be kind, be compassionate, and everyday is a blessing!
Is there anything you would like to add about your journey? I wish there were more people that had an understanding and awareness invisible diseases if we could raise the awareness like the awareness of cancer it would be amazing thank you for listening to our story it means the world to me.
Thank you for sharing your story with me and with the world. Here is to hoping there is more understanding and awareness for invisible and chronic illness.