Today I am excited to share Brenna's chronic illness story with you. She is a creative warrior who has been battling a multitude of chronic conditions including POTS, Gastroparesis, MCAD and many more for over a decade.
This interview is part of an ongoing series where we meet spoonie warriors from around the world who share their struggles and victories as they navigate life with various chronic conditions or invisible disabilities.
I hope this series will encourage you and perhaps help you to find answers and community. I know that many of the things which I now depend on to manage my conditions came from listening to patients with more experience. I hope that, by sharing these stories, newly diagnosed warriors will feel more supported and less alone.
Please Note: these posts are meant as a testimony of personal experience and are not to be considered as medical advice. Please do your own research and consult with your doctor before making any changes to your care plan.
POTS, Gastroparesis, MCAD And More, Interview With Brenna
Tell us a bit about you
A young and passonite artist who is doing her very best in the midwest.
When you were a child, what did you want to be when you grew up?
In about second grade I wanted to be a Herpetologist! Currently I am aiming toward forensic anthropologist!
What gets you excited about life?
Animals! Horror movies! Weird beautiful art and the people behind it! Advocating for myself and others!
If you could go back in time, which words of wisdom would you give your teenage self?
Reach out. It is so much easier to find help than you think. Your parents will understand and forgive you for being distant. Those bad thoughts will go away if you tell someone. Telling your story will connect you to others dealing with the same hurt you have been dealing with all your life. Breathe. Easier times will come.
What It's Like Living With Postural Orthostatic Tachyacardia Syndrome, Gastroparesis, Asthma, Eczema, Chronic Fatigue, Dysautonomia And Mast Cell Activation Disorder
1. What are your main symptoms?
Fatigue, naseua, joint pain, abdomnal pain, easy bruising, severe allergic reactions, dizziness
2. Briefly describe the process you went through to get your diagnosis.
Many local doctors, then local specailists, finally a referral to Mayo Diagnostic clinic. 10+ years of misdiagnoses and stumping every doctor.
3. What did a typical day look like before you fell ill?
I was a happy young child! Perfect attendence in school with all the extra after school activities. Never sick, super bossy, always smiling!
4. What does a typical day look like now?
Mostly sleeping. Extremely tired while awake. Little energy to do anything but make myself food and watch tv/check my phone. Never know if eating will be an issue for the day.
5. What are some of the helpful adjustments you have made at home or at work?
I had to compeltely stop going to school and work due to pain and fatigue. My mother is my full time caregiver and stays home to supervise me most days.
6. What do you wish the general public knew about your conditions?
Fatigue does not equal lazy! I am very hard working when I have the productive energy!
When I refuse to eat it has nothing to do with my look, it has to do with pain, and YES that tiny bit of food will HURT.
Just because I am wearing a brace or using a wheelchair does not mean I am faking. These are aids that prevent me from hurting myself further or so I can actually leave the house.
Handling multiple chronic illnesses is a full time job.
7. What advice would you give somebody who is newly diagnosed?
Reach out! Soical media is a great way to find resources and people dealing with similar problems.
BE YOUR OWN ADVOCATE. Sometimes doctors are wrong! Do your reasearch, ask questions, dont believe everything you are told. If you are questioning your doctor get a second opinion.
While you feel betrayed by your body remember that you are more than a disease and desereve the love and kindness of someone who is able bodied.
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