Finding Hope Amidst the Challenges: My Battle with hEDS, POTS, and Multiple Chronic Conditions

When did you first start experiencing symptoms? 

At birth. I was born 6 weeks premature. From 1 to 2, I had chronic tonsillitis. From 3 to 6, I had chronic ear infections and hearing loss - Grommets at age 4. At 9, I had a kidney infection. At 10, I began having frequent injuries which I now know were subluxations and dislocations from my hEDS.

How did you go about seeking a diagnosis?

It was different for each condition. I did a lot of research into my symptoms and potential diagnosis. I actually had a teacher in year 10 who had POTS as well, and she told me that I needed a tilt table test, so I eventually convinced my cardiologist (who only listened to me after I burst into tears and said that I was failing school) to allow me to have one. They said that I had Neurally mediated hypotension which was a misdiagnosis. I was later diagnosed with POTS by my new cardiologist who specialises in POTS.

How long did it take for you to receive a diagnosis? 

Two years for my POTS, 3 years for Fibromyalgia, and 4 years for chronic migraine. All my other conditions are assumed by my doctors but cannot be officially diagnosed because I am too young for certain exams and because some of my doctors think that a diagnosis isn’t important without any treatment options.

How did you feel when you received your diagnosis? 

Relieved that there was a name for what I was experiencing and that I’m not crazy.

How did you communicate your diagnosis with your loved ones? 

Well, my parents are both nurses which helped, and I have many family members who also have Endometriosis and Fibromyalgia but it was difficult trying to explain what POTS is and that it is not “just anxiety”.

What treatments have you undergone and how have they impacted you? 

I do lymphoedema treatment for my Eustachian tube dysfunction to help drain fluid in my head which has helped my pain and pressure in my head a lot. I also take midodrine and Florinef to raise my blood pressure (POTS) and dexamphetamine (chronic fatigue) which has helped a lot and allowed me to exercise and go to school again. I also take amitriptyline daily for my pain management - chronic migraine, chronic pain, Fibromyalgia and Endometriosis.

What is the most difficult part of your treatment, and how do you manage it? 

My lymphoedema treatment hurts because it involves heavy massage as well as lasers but the people that do the treatment are lovely and we chat the whole time, so it is actually really fun.

What has been the most challenging aspect of living with your condition?

The impact that it has on mental health. The grief, the all-consuming pain and the constant missing out on things sucks. I feel so behind in comparison to other people my age.

How has your daily life and routine been affected by your condition?

I wake up daily with 5+ subluxations and dislocations. Before medication, I would cry myself to sleep in pain, wake up during the night in pain, dream about pain and be in pain before I even opened my eyes. I also have to make sure that I take my midodrine because I cannot function without it because my BP will drop very low. And have frequent small salty meals/ snacks to keep up my BP because my energy completely fades very quickly.

How has your condition affected your mental health and emotional well-being? 

Mentally it has been hard to have hope and to survive the constant pain and fatigue because I feel so out of place with my able-bodied friends and family but my conditions are much more manageable now so I tell myself that I have survived all my previous dark days so I will survive today.

What strategies have you found helpful for managing your emotions and thoughts? 

I journal every night. I basically just rant and get out all my emotions. A friend told me once to allow myself to let me feel my feelings. To cry if I need to cry, scream if I need to and jump for joy if I feel like it and that has helped a lot.

How has your diagnosis impacted your relationships with your friends and family?

My best friend Em - my neighbour that I’ve known since we were 11, is chronically ill as well so I feel like it has made our friendships stronger. But with everyone else, I feel like it has really highlighted the people who claim that they will always be there for me and the people that actually are. I have many friends that actively support me by researching my conditions, standing up for me when I need them and always accommodating me. But other people - both friends and family make me feel like a burden and say extremely insensitive/ rude things like one time my grandma said that I only collapsed after playing sports because I am a “fat slob,” which really hurt.

What support systems have been helpful during your health journey? 

My best friend Em who has gone through a similar journey has been pivotal as well as my teachers at school - especially the one that has the same condition as me and another who I became really good friends with. She allowed me to actually speak about my health and the impact that it is having on me without getting uncomfortable like so many other able-bodied people do.

What advice would you give to someone who has recently been diagnosed with your condition? 

I would tell them that there is a community out there. Get involved in the chronically ill/disabled community and find people that are like you. Because they will understand, support, and affirm you and that will help you feel less alone.

What advice would you give to your past self if you had the opportunity to go back in time? 

I would tell myself that things do get better and that you will be ok. A few years ago, I could never have imagined graduating high school and going to university but here I am 3 years later doing exactly that. I would tell myself that it is ok to not be ok if all you do is survive - you have done your best.

How can others be more supportive and understanding of people with your condition? 

I wish that other people would research my conditions themselves so that I don’t constantly have to educate them all the time. And that they would accommodate for my health issues while also still treating them as equal. Still having fun and mucking around, it is okay to make (appropriate) jokes about my health and please don’t tell me not to talk about it because it affects all of my life.

To get involved with POTS advocacy in Australia, click here.

Your mental health is important. Find mental health support today, click here.

Learn more about Ehlers-Danlos Syndrome and find support and community here.

Are you a chronic disease warrior, or know someone who is? We would love to hear your story! Contact us at marketing@jonda.io to find out more about how to get featured on Jonda’s Patient Voices. Let's inspire and educate others facing similar challenges by sharing our unique health journeys and raising awareness, together.

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Disclaimer: Please be aware that the content of this patient story, is solely the viewpoint of the individual(s) involved and should not be considered as medical advice.