REAL FACES of HYPERMOBILITY:

Face #6: Brittany

Brittany, what’s your diagnosis?

My diagnoses are a plenty but not defining. For hypermobility, I was diagnosed with hEDS and later cEDS. Yes, both EDS types do mimic and repeat symptoms, diagnostic criteria, and type of disease manifestation. I was recently asked how I have both when hypermobility is a part of cEDS too. I too was confused, because all I could say was, “well, that’s what my geneticist said”. After asking him this question, we found out that each parent carried a different mutated gene, one being hEDS, other cEDS. Due to this, having a double mutation, I have the genetic disposition, characteristics, and symptoms of both (even mirrored symptoms).

I also have other co-occurring diseases that have either been caused by EDS or have influenced the progression of my EDS and other diagnoses. Those illnesses are Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Disease (MCAD), Gastroparesis(GP), Cranial Cervical Instability (CCI), Seizures, and more that aren’t coming to mind.

 

How old were you when you started showing symptoms?

2 years old

And how old were you when you got your official diagnosis?

21 years of age.

Are you able to work? If so, what do you do?

I attempted, but currently no. I started my private practice for mental health counselling, focusing on people who have chronic illnesses and those who are d/Deaf.

Do you have a family of your own?

No, just a dog.

How many health professionals are on your team?

I have 6 health professionals who I work with to maintain my health.

Which of those health professionals is your “go-to” person when you have questions, or things are going pear-shaped?

My primary care provider or Autonomic Neurologist.

What’s the most problematic symptom of your hypermobility condition?

Pain. When I was first diagnosed I never thought my pain would get to this point. Others would discuss and explain their pain, I didn’t believe them. Well for me now it’s true.

Also, the amount of time my joints spend out of place versus in place. It is very tiring; it has gotten to the point where it hurts more for my joints to be in place than out. Having constant dislocations, pain, and exhaustion is what impacts me the most, but does not define me. One day, one moment, one second at a time.

Have you had bad experiences with ignorant health professionals? Can you tell us about one of those experiences?

Oh, my yes. I had a surgeon not listen to me or my concerns with EDS. She didn’t follow my emergency plan, my post op care needs, or my awareness of what I can use or can’t. Because of this, I developed sepsis and was in the ICU for 8 days. I had to have my site heal from inside out. Therefore it had to be packed and cleaned multiple times daily. Her ignorance forever affected my life. Sepsis, surgeries, scars, and constant fear all developed from this experience.

What’s the one thing you want the world to know about hypermobility?

I want people to know that even though I can stand and walk one day doesn’t mean I’m not sick or don’t hurt. I may be in a wheelchair the next day. There are days I can walk more than others, but it still hurts, even though you can’t see it. With that though, having EDS isn’t what defines me or makes me. Same with hypermobility; it hurts, it’s tiring, and a lot to handle. But it isn’t defining. My hands make fun shapes, they’re my ‘party tricks’, but I am the party, not my EDS.

Why is getting the message out about hypermobility so crucial?

Awareness has always been the most important thing to me. Not even with this only, but with other diagnoses as well. I want to be a voice for those who don’t have one. I want to support those who have fallen. I want to help those who have lost hope.

Diseases that people don’t understand I believe deserve the most amount of awareness and knowledge to be spread. That way when a 7-year-old goes to the Dr., she doesn’t have to fear waiting 10 years to find out what’s wrong. Instead, giving resources right away and support in the process.

People are not alone, EDS is real, and awareness is needed. I want to be here for them, support those who hurt and be a resource/voice for people who need to know about it. Love the person who had EDS, at times this disease can feel isolating, having even one person that cares can make the biggest impact.

 

Are there/have there been any plus sides/benefits to having your hypermobility condition?

I try my hardest to see the good in every situation, or at least find something good. With EDS comes perks! What may they be people ask? Well, these include being able to fit into tiny spaces because we can fold our bodies into comfortable positions that others can’t. I can always scratch my back myself. Whenever I’m in the hospital I feel like a patient in Greys Anatomy because of all the interns, residents, and medical providers coming in and out; I see that though as being able to help with their education and spread awareness of EDS to hopefully help others in the future. I want to tell my story, not for attention, not for a pat on my back (which I can also do myself lol EDS joke), but in hopes to help others in the future. I want people to know they aren’t alone, that people support them and get it, and spreading my story could help that I think.

I also have a community of people who are family. I have made friendships that turned into family bonds. I know I can go and talk to these whenever I need and they know my pain, they have felt the same joy, and support me in ways others don’t understand truly.

If getting sick means, I can help others then it is worth it. If I can be someone’s go to for answers or support, then it’s worth it. If others know they aren’t alone and people are here to stand, sit, lay with them, then it’s worth it. I recently got my Masters in Counselling Psychology; I never thought this is where I would end up. Because of my illnesses, I can focus on others who also have chronic illnesses as a therapist who empathises, understands, and will be proactive yet level with my clients. That isn’t something you can “just get” by being a therapist. Life gives you that, and my chronic illnesses and past gave me that. EDS has negative aspects, but it has also provided many positive experiences in my life. I can help, support, feel supported, and spread awareness one word at a time.

Any other burning thoughts you want to add?

Learn to love something about yourself. It may be hard some days to find that one thing, but even if it is one strand of hair, love it. Love that hair. Love your smile, your nail polish, your laugh, your friends, or anything else. Love you!