1. Do you have a primary diagnosis, if so, what is it?
A: Unfortunately I’ve racked up a few over the years, so let’s go in order of diagnosis date: Arrhythmogenic Right Ventricular Dysplasia(ARVD), Heart Failure, Complex Regional Pain Syndrome(CRPS) and Anxiety with Depression.
2. How long did it take you to get diagnosed?
A: I was diagnosed after a family member tested positive for ARVD - it’s a genetic mutation. I received confirmation in only a few short months after testing began in 2006. Heart failure came in 2013ish, CRPS took me six months to get a diagnosis after extensive testing last spring and then anxiety with depression showed up as well. Honestly, anxiety/depression was the easiest thing to get diagnosed, I’ve learned over the last year it’s pretty common for people with chronic illnesses to develop anxiety/depression.
3. How did you feel when you were first diagnosed? (ex: relieved, upset, numb?) What was the first thing you did?
A: I was only fourteen in 2006 when I was diagnosed with ARVD and I remember thinking it wouldn’t change anything, I was so confident I’d be okay. I was actually woken up from an EP study and told I wouldn’t be leaving the hospital without a defibrillator but I still really wouldn’t understand the full impact of my diagnosis until years later. Then around 2013ish (I think, I have a hard time remembering things) I began showing symptoms of early stage heart failure, which have continued to progress. In an attempt to help my heart in 2016, I under went a procedure that ended up damaging my brachial plexus; giving me CRPS in my right hand and arm. By May 2017, I had been living in constant pain for months with worsening heart failure symptoms, despite surgery, and I developed anxiety with depression. CRPS Diagnosis was the hardest one to accept, especially since it occurred trying to help my failing heart. Knowing my right hand will likely never have full function again and I’m probably always going to have varying degrees of pain is sometimes a tough pill to swallow.
4. What advice would you give to someone who is chronically ill but undiagnosed?
A: DO NOT GIVE UP. You have to be your on advocate, nobody will ever care about your condition as much as you do. My first symptoms recorded regarding my heart is when I would tell my mom my chest would hurt at two years old - I didn’t receive a diagnosis for 12 years and only because of someone else. At eight years old a cardiologist cleared me of any heart abnormalities and I wasn’t ever recommend for another follow up. I could easily have died had my family member’s diagnosis not became known in 2006. ARVD causes tachycardia which can cause instant death. Because of this is why I have a defibrillator and it has saved my life on countless occasions.
5. Has your chronic illness changed your perspective, and if so, how?
A: Yes, especially within the last year dealing with CRPS, anxiety and depression on top of my heart issues. It has been a lot to adjust to, but I try hard to find the positive in every situation. Every single “bad” thing that has happened, I can put a positive spin on. It’s really all about perception. I have learned it’s normal to fall as you learn to walk in your new life, change is hard, but you always have to get back up. ALWAYS.
6. What moment are you most proud of in your chronic illness journey thus far?
A: That I’m still alive because living ain’t easy.
7. What was your hardest (or lowest) moment, mentally and/or physically, that you’ve been through on your journey
A: Since November 2016 I’ve been in the hardest, deepest and darkest parts of my journey. I’ve suffered unimaginable pain, I’ve cried more days than I haven’t and I’ve learned that sometimes life just kicks you when your down and keeps kicking. The daily pain, shortness of breath, fatigue and anxiety/depression can be too much some days but I just remind myself “this too shall pass.” I know better days are ahead, I don’t know when they’ll be here but I know they’re coming.
8. What or who has helped you the most during the lowest days?
A: Family, 100%. My fiancé and my parents have kept me together on days I no longer could. I am not joking when I say I wouldn’t be alive today if it wasn’t for their combined efforts over the years.
9. If you had any words of advice for someone struggling with a similar diagnosis, what would they be?
A: I recommend trying to find an online support group, it has been so helpful for me over the years. Then, always continue your own independent research. Doctors do not always know all the treatment options or latest drug therapies. In order to have the highest quality of life, you have to continue to work for it. Also, you have to accept your diagnosis and that your life has changed but you can never use it as an excuse. Lastly, find a hobby of some type, you will be glad you did.
10. What would you like the world to know about life as a chronic illness patient?
A: Chronic Illness is not a choice and it can feel like a curse. Especially having an uncontrolled one, it can turn into an unpaid full time job that demands constant over time and it isn’t one anyone wants. So just because you can’t see my illness doesn’t change the daily hurdles it causes me. On days those hurdles trip me up and cause me to fall, just know I truly am sorry I have to cancel our plans last minute.
Maudie | @maudiekay