Join Angela Arndt as she shares her chronic illness journey living with EDS, and fibromyalgia.
Learn about EDS here https://ehlers-danlos.com/what-is-eds/
Find information of fibromyalgia here http://www.mayoclinic.org/diseases-conditions/fibromyalgia/basics/definition/con-20019243
Where are you from? Tell me a bit about yourself. What is your name, age, and disease/invisible illness/mental health?
My name is Angela Arndt. I’m in my fifties and I have Ehlers Danlos Syndrome and fibromyalgia.
When did life change for you?
Life first changed for me after I began teaching school. As a first year teacher, I was warned that I would get everything the kids would bring in, but when I got sick, I couldn’t shake it. I was newly married with two step-children and had worked so hard to get my Masters degree, I’d worn my immune system down. The school building wasn’t airconditioned and did I mention that I lived in South Carolina? My classroom was on the third floor and I ached every day, climbing the stairs. I didn’t know what was going on with my body and I had to leave mid-year. It was five years before I could work again.
What was life like before diagnosis?
Since EDS is genetic, I’ve always had health issues. I can remember being at summer camp, limping because the bones in my foot was hurting. My doctor told my mom I might have a touch of arthritis and to keep away from concrete floors. Not sure about the logic of that.
Because of my age, people didn’t know about fibromyalgia or EDS. I’ve been told that I’m faking it, depressed, anxious, should go have children (yes, a doctor said that), and had chronic fatigue syndrome (or “yuppie disease” as it was called then). You can imagine the looks, the whispers, and the “helpful advice” I’ve received.
How has your diagnosis changed your life?
The title, “disabled,” regardless of what disease came with it, changed everything. Because I couldn’t take care of myself, we decided not to have children. My Masters degree is largely wasted, although I am writing a little, as I’m able. I made more money than my husband, so our lifestyle changed drastically.
Please describe the best you can a day in the life of you?
I get up at 5:30 a.m. because it’s my best time to write. Hubby gets up to take the dogs for a walk because I’m barely able to move. I take my medicine, then read my Bible, pray for my family and friends while I wait for the pain to subside. When I’m able, I get a cup of coffee and then write, answer emails, update Facebook, etc. My mother moved to our town after my stepfather passed away, so we incorporate her doctor visits and medicine refills in with mine. My good hours end at one and I usually go back to bed at two. When I get up, around three, I’m in pain again and I can do very little except watch television.
The pain I feel each day is constant, even with the medication I take. While my lower back, hips, and knees hurt most of the time, my shoulder and neck is less constant, but just as intense. I also have migraines that usually last a few days, but as of today, I’m starting my fifth week with this one. I’m going to see a neurologist at the end of the month to see what’s going on.
What was/is the most challenging thing you have faced because of your diagnosis?
The isolation has been the worst. Even with all the physical pain, nothing can touch the pain of having friends and family who don’t want or care to understand why you can’t keep or make plans. I have family members who aren’t speaking to me because I was too sick to come to a dinner. We don’t invite anyone over because I can’t do housework. Even with the “world wide web,” there are very few who truly understand the pain in my body and my heart over the things people say and do.
Do you find that you can keep up with others?
No, not even my 87-year-old mother.
What would you tell others living with your diagnosis?
To be informed. Don’t rely on anyone knowing everything about your condition. And don’t let them tell you that you’re not sick when you know you are. Like I used to tell my students, you have to do your homework.
What would you like to tell others that don’t live with a similar diagnosis?
Try to be more understanding when someone has to change plans or even refuse to make plans because of their health. There is no way in the world that you truly know how they feel, don’t try to read anything into the refusal, just take it with genuine concern. The Golden Rule is always a good place to start, “do to others as you would have them do to you.”
What have you learnt on your journey?
That doctors are very busy. It’s hard for them to hear everything they need to hear in the ten minutes they see you in the office, especially after you’ve been in their waiting room for over an hour. If that doctor does understand (or want to understand), find another one. Ask for referrals from others who have similar symptoms. Join a support group and do whatever you can to make yourself better. You can’t help anyone else if you don’t help yourself first.
Is there anything you would like to add about your journey?
Just that God can still use me, even as sick as I am. I can still pray and encourage, even from my chair or my bed. As long as I can do that, I’m still a productive person.
Did you want to include a photo of you?
(I think you’ve already gotten a photo, right? If not, just let me know.)
Thank you so much Angela for sharing your journey with me and the world. Support groups make all the difference in ones disease/chronic illness journey.