10. What do you want people to know the most about your life with EDS?
There are so many things that I want people to know – that my level of ability and disability fluctuate from day to day and sometimes hour to hour, that EDS almost never travels alone – and almost always comes with co-morbid conditions, but most of all I want people to know that my life with EDS is first and foremost just that, a life. I may have different challenges than the average person, but that doesn’t mean that I don’t want the same things as everyone else.
11. When did you first start thinking that the dislocations/subluxation, extreme flexibility ect. could be related to a real problem?
I always knew that I was flexible – it came in handy as a gymnast while I was growing up. I didn’t connect my flexibility to a problem until my physical therapist at the Michigan Headache and Neurological Institute ran my first beighton scale on me (7/10) and told me that I had hypermobility that may be related to my neck and head pain. She started me on the path towards diagnosis.
12. Did your related diagnoses come before or after your EDS diagnosis?
Some of both – the more common diagnoses like Fibromyalgia, Migraine, Chronic Fatigue Syndrome, and IBS/GERD came before the EDS diagnosis. The EDS diagnosis helped to explain WHY I was experiencing all of those things. The less common (in the general public) Dysautonomia and Mast Cell Activation Syndrome (MCAS) came afterwards, as the geneticist recommend that I be tested for them.
13. What’s your biggest pet peeve about trying to explain EDS?
EDS is a complex condition – and while most people (if they have any knowledge of EDS) think it’s a joint disorder – it’s not just our joints that are affected. Collagen is all over the body, that’s why it’s called connective tissue. Therefore, it can impact any and all of our body systems. That also means that it presents uniquely in each individual. There is no “stereotypical” presentation of EDS. Doctors especially should not be surprised if it begins to impact systems outside of the joints.
14. Has being sick impacted your relationships?
Yes. Being sick means that I have less time for maintaining friendships than I would like. It also means that my husband J had to learn to be empathetic about something he’s never really experienced. J is one of those people who’s NEVER sick – which is lucky – it’s just one more way that we balance each other out. While it wasn’t always easy, he has tried really hard to understand my experience and at the very least to ask me about it so that he can get a read for what I may or may not be able to do on any given day. I am so fortunate that he has worked so hard to understand my pain and illnesses. I am also fortunate that when I need him to, he is willing to step into the caregiver role. He has sat by my bedside, rearranged his schedule more times that I can count so that he can be at an appointment or procedure, and even learned to run my IV protocol for migraine when I was getting it at home. He has shown me over and over that his love is unconditional, and I know I am so lucky to have him, and that not every partner is willing or able to do these things.
15. What were your initial thoughts about being diagnosed?
I wrote quite a bit about my feelings after diagnosis. You can check out some of my thoughts at the time here: Why I’m At Peace with my Diagnosis. In short though, I felt relief because I already knew that something systemic and serious was wrong with my body, I just didn’t know what it was. Having a diagnosis meant that I had a direction, a way to plan for treatment, and also a community. I have met so many great people online and person through support groups for EDS and this space. The one thing I will say that I wasn’t quite expecting is that an EDS diagnosis is a journey and not a destination. Since my diagnosis in March of 2016 I have been to more specialists than I can count and acquired several more diagnoses. With each one though, I am grateful that I am able to learn a little bit more about how my body works and how to support it so that I can be as healthy as possible.
16. What healthy habits have you adopted since getting diagnosed?
Before diagnosis I had already adopted a gluten-free diet because my GI had determined that I have an intolerance. Since diagnosis I have been working with a practitioner of integrative medicine, and have added a high potency probiotic, digestive enzymes, and a handful of other supplements specific to my body’s needs (in short I’m really bad at absorbing nutrients and really bad at digesting a variety of substances). I have also dropped dairy, and a number of other (mostly high histamine) foods that I have reacted to along the way. I haven’t ever used artificial sweeteners, but I also have stopped eating processed sugars since diagnosis.
I have also gone to a variety of physical therapies (joint protection, neck specific, balance, and aquatic). These therapies have taught me safe ways to engage in exercise again. The most successful mode of exercise has been aquatic therapy/exercise because it does not aggravate my Dysautonomia the way that exercising on land does.
17. How do you feel about your current treatment plan?
I am in the middle of struggling with insurance to get some things covered that I need, but in general I feel pretty good about my plan. The most difficult part is that I am my own case manager. I am the one who has to relay information between specialists, and spend hours on the phone with my insurance company. The best part is that I think I have found a pretty good group of doctors who are EDS literate and understand it as a multi-systemic condition. My local EDS support group has been essential in helping me find these people, and making suggestions about how to make adjustments to my plan that will improve things for me. It is always a work in progress!
I think that an important part of my plan that has supported me having the best quality of life possible has been embracing both western medicine and more holistic practices. In addition to a team of traditional specialists, I also have a chiropractor who is well versed in EDS and an acupuncturist. My integrative medicine doctor is the only person I have who looks at my whole body, and that is invaluable. Embracing every type of help available has made my plan work better. I know that not everyone can afford this (we barely can), but I think that especially for people with EDS or other incurable conditions there is a lot of value in looking into less conventional practices.
18. What do you think is the most misunderstood aspect of EDS?
It is a myth that EDS does not cause pain. It is possible for someone with EDS or a Hypermobile Spectrum DIsorder (HSD) to not experience pain (especially in youth) – but more often than not EDS causes some sort of pain.