Morgan is a 29-year-old who lives in Great Britain. She works as a Digital Marketer for a charity and runs an Etsy shop to spread awareness for chronic disabilities (including IIH) where some of the proceeds goes towards the Ehlers-Danlos U.K Charity.
Starting in her early childhood, she experienced multiple physical ailments but it was not until she was 23-years-old when she was finally diagnosed with Type 3 Ehlers-Danlos Syndrome. This diagnosis prompted further workup and she was found to have a long list of additional conditions:
- Mast Cell Activation Disorder
- Interstitial Cystitis
- Pelvic Pain Syndrome
- Borderline Personality Disorder
- Irritable Bowel Syndrome
- Gastrointestinal Reflux Disease
- Chronic Bilateral Ankle Instability
- Oral Food Allergy Syndrome
- Chronic Fatigue Syndrome
- Slipped discs in my spine
- Osteopenia
- Dyslexia
- Dyspraxia
Despite a large amount of time spent seeing doctors and experiencing pain, she managed to complete her degree in Marketing at a university. In 2018, she fractured both of her ankles and used this time to make bracelets to the fund equipment she needed to help her recovery. As sales for her products increased, so did demand. This motivated her to set up an Etsy account where up-to-date, she has had over 2,500 sales.
Her online success does not come easy. She has to balance a full-time job, her chronic conditions, and managing her online business. She has learnt with time how to make her business successful as far as: search engine optimisation (SEO), product photography, testing materials, making designs, customer service, and so much more. She continues to research other chronic conditions to be as inclusive as possible and she also accepts custom orders. In the near future she hopes to have a bracelet for most conditions, make stickers, and add keyrings again.
“Making bracelets is a great distraction and really helps with my mental health. I have also been fortunate enough to connect with other spoonies over the years and some customers have turned into friends. ”
Morgan does not have IIH, but she certainly knows how to manage her chronic conditions.
Morgan’s main bit of advice: try to learn to pace and take breaks in between tasks or activities. For Ehlers-Danlos Syndrome, taking long baths, using wheat bags and electric blankets for chronic pain. For mast cell activation disorder (MCAS), I would say always carry 2 epi-pens and for Interstitial be aware of your diet as this can trigger flares.
In general, I would say try to keep your medical records in one place (I have not been so good at this) as not all medical facilities can access your records. Don’t be scared to take loved ones to medical appointments if needed and don’t be afraid to ask for help when you are struggling. I have found disclosing my health conditions at University and in the workplace has helped with reasonable adjustments being made. A pill box has helped me remember to take my medication on time. Unfortunately, due to chronic illness relationships and friendships have not always worked out but it has taught me who does actually care about me! If you would like to work I would suggest looking for a hybrid or remote role as this helps conserve your physical energy.
Morgan would also like to add:
I don’t know about everyone else but I feel like a medical journey never really ends. I am still under many investigations but I am doing the best I can and trying to raise awareness where possible! I am very passionate about making jewelry and in the future I am looking at the possibility of enrolling in a professional jewelry making course in London (to learn how to make wedding rings, wax casts, stone setting and all that jazz).
Thank you Morgan for sharing your medical journey with us and for creating awareness for many chronic conditions including IIH.
If you would like to visit her Etsy shop to see what products she has available visit her at: https://www.etsy.com/uk/shop/ChronicCreationsGB or follow her on her Instagram handle: @chroniccreationsgb
