For a bit of relevant backstory, I wasn’t diagnosed till I was in my mid 30’s. This meant I had quite a number of years thinking that a lot of really abnormal pains that I was experiencing were normal. I discussed this is more detail when I wrote about how it impacted my ability to interpret pain in a previous post, but this is about a slightly different, yet related, aspect.

When you have a syndrome that causes pain that’s uncommon for someone your age, along with uncharacteristic presentation? It can make it hard for doctors to even realize something is actually wrong in order to help you. I distinctly remember being in 4th grade and having issues with my hips rolling out and making it difficult in PE classes. But all of my concerns were brushed aside. The pediatrician, as far as he was concerned, saw nothing to suggest that my hips were having any significant issue. To be completely fair, here was a child that would rather draw, read books, and play music than do sports. When he did a quick exam of my hips, they weren’t out of place because they’d slip back in on their own. He wouldn’t have felt them partially dislocated. All he had to go on, was my word that I was in pain, and that wasn’t enough for him.

While I can point out my disappointment at how I was treated, the fact remains that it caused me to think that I was experiencing a disproportionate response to every day events that normal people feel without issue. I accepted this as truth, and the way I handled it, was to push past the pain. It became a part of my personality. I’d get light headed when I stood up to fast, but I forced myself to work around it. When I heard some runners talk about when they’d hid an almost trance state? I assumed that’s what I experienced so I continued to push past it. In my mind, if they could, I could too.

I spent an awful lot of energy on this. Looking back, probably an unhealthy amount of energy on pretending the pain didn’t bother me. But I wanted to prove that I wasn’t as weak as it was believed I was. I couldn’t run fast because my breathing would shut down. I didn’t have a lot of stamina because I’d get light headed. I couldn’t do pull-ups or push-ups to save my life and I didn’t realize at the time it was my shoulders were subluxing. Even tasks like volleyball would jar things in my joints. I didn’t know it was because my body wasn’t built right, so it was simply incentive to push harder.

Fast forward to 2016, when I suffered an injury from a rolled ankle that I couldn’t push past like I was used to. The more I pushed, the worse it got. After 9 months in a walking boot, I was sent to a Podiatrist that specialized in Ehlers-Danlos. And after a relatively brief assessment, told me if I kept pushing, I was going to walk myself into a wheelchair.

The Fear of Loss

It’s an odd thing to be faced with. Degenerative disorders that will eventually steal bits of your normal function. It’s a horrible looming threat that will creep into everything you do if you’re not careful. I know I’ve found myself acutely aware of it every time I’m able to go out and do things. I wonder if it’s the last time I’ll be able to fully enjoy it. Sometimes it’s a slow degradation, while other times it’s a sudden injury that permanently tips the scales.

This gets further muddied when healing comes into play. Many of us feel a pressure to heal as fast as possible. Much of it is stemmed in that fear of missing out. It can be a feeling that’s quite consuming, and understandably so. Granted, there’s a ton of adaptable tools and mobility aids. Unfortunately, many still suffer from a stigma from utilizing those…even if some of that is fully self-imposed.

Speaking from personal experience though? There’s a bit of grief that will follow such a shift, even if it is simply a different way to enjoy a hobby. And being that it’s human nature to avoid pain, and therefor grief? It only makes sense that we try to avoid such dramatic shifts in our lives. Even if it’s that avoidance that can further create problems. There’s many things that while healing from surgery, I was stubborn and found ways to still perform certain tasks. While other things, I’ve not bothered. I once shot competitive archery, and haven’t been able to bring myself to shoot with a crossbow. It’s a completely self imposed limit that’s pure pride. So, I get that there are some times where it’s easier on the mind to let something go than force it.

Pick and choose your battles, just as long as you are aware that you’re doing so. It’s not going down without a fight if you simply choose to focus your energy on one aspect of the war that takes priority. It’s okay and even expected to experience grief at a loss of a hobby. It’s okay if that grief comes up if you’ve just had to shift how you perform that hobby. Let yourself feel however you feel about it, and when the wave of it crests and fades once again? THEN decide if and how you will move forward about it. Loss will happen with EDS. As with any degenerative disorder. It becomes more about mitigation and the proactive decisions for the long game…at least as much as one can.

Diagnose Aggressively, Treat Gently

When I asked my surgeon if there was anything he feels strongly about that I should include, it was the concept of diagnosing problems aggressively, but treating them gently. Ideally, because of the problematic collagen that is at the root of all different types of EDS, we can have minor issues that can escalate very quickly into quite severe complications. We should be very active about getting our bodies checked out for common complications. I know from past experience in Pittsburgh, PA…a mix of insurance and medical professionals being unqualified in rare disease treatment can make this extraordinarily difficult in an official sense. I’m extraordinarily blessed to have several highly skilled members of my team that I can contact and get a speedy response from. However, that wasn’t always the case and I learned some skills to get around this as best as possible. Those skills have been further developed ever since my official EDS diagnosis.

I wrote about the diagnostic aspect in a previous post, but the general idea is that one can direct a lot of that energy to research. There’s a lot of nuanced information, and for the sake of not wanting to rewrite the article here, I suggest going over to that link and taking a look at the original. The only thing I currently have to add to the past post comes from my new Optometrist. He stated the most important thing is that we monitor closely for any problems. The faster we catch a problem, the less likely it will swiftly progress to something irreversible. It’s better to be overly cautious and never see a problem, than it is to completely ignore the risk factors. With EDS patients, by the time we consider something “bad enough”, it can often be beyond easier and less invasive treatments.

The other half of this, the idea of treating gently, is something that needs a bit more attention. Especially considering what I wrote about the grief aspect that comes with the fear of loss. How do we find the balance between putting effort into healing while not giving into the negative motivations lurking in our minds?

My personal suggestion, is to put effort into switching your perspective. If you utilize your ability to research as an energy sync, take some of that to look up the expected heal time for the average person. For example, someone without EDS, still is expected to take 6 months to a year for a tendon graft to fully take. If it will take that long for a normal person, it should be obvious that it will take a minimum of that time for us…if not longer!

Instead of trying to perform normal tasks ahead of schedule, turn your focus into thinking about resting as active treatment. You’re not sitting there doing nothing, you’re lying in bed with your limb elevated to directly impact blood flow to the area and reduce inflammation. You’re not being lazy and a burden, you’re intentionally making choices to give body the chance to do the work it needs to. I’ve even had times where I’ve made a conscious effort to see it as putting my body in time out instead of letting my down time be a punishment for myself.

Even my physical therapist, who is quite skilled with EDS folks, takes things at a horribly slow and gentle pace. She has often discussed with me the need to treat patients such as myself with great care. To treat us with awareness that, no matter how much we don’t want to admit it, our bodies are a bit fragile. Exercises that will never create sore muscles if done right may mean that progress is painstakingly slow. However, it also means that we’re not reducing our joint stability and risking further injury when our muscles get sore and tired from overexertion.

It’s a shifting of one’s mindset from using energy to push past pain and, instead, using it to find work arounds because of the pain. While we’re used to forging ahead on the shortest path ahead of us, taking the long way around can bring us to a more complete healing with an improved success rate.

My Personal Success Story

I’m not going to tell you that if you just have hope, EDS can get better and all your problems can be reversed with a positive outlook. However, all that effort I mentioned earlier? That I put into trying to push past pain? I put into resting when I was directed to.

Looking back, I honestly can’t even tell you why exactly I decided to listen to my surgeon at the time. It’s never been in my nature to rest properly and I was ALWAYS disobeying orders to let my body rest. Maybe it was the sincerity in his voice when he told me I would walk myself into a wheelchair. Maybe it was when one of my best friends said I owe it to myself to do everything I could to walk again. Maybe it was a mix of a lot of things. But whatever the reason, I actively made the choices to do exactly what I was supposed to do, and not push beyond that.

This was exceptionally challenging when I had unique complications that prevented my healing and required further treatment. My leg lost a considerable amount of muscle mass. There were times where I wondered if I would never walk properly again. There were times I wanted to break the rules and just walk on it anyway, pushing past the pain, trying to force my body to listen to me. I’ll be honest and say there were times I felt it was hopeless. Thankfully, in those times, I had a lovely support network and a surgeon that was actively invested in his patients. But what’s most important, was that I was still actively making choices to try and give myself the best chance for healing in the long run.

It was incredibly difficult. I won’t pretend otherwise to make it more enticing.

But as of right now? I’m walking up to 7 miles without rolling either of my ankles even once. The pain is greatly reduced. I go up and down stairs without a problem. I’m getting back everything I had to put on hold while healing. The joy that brings? That I could walk on the beach with my friends, in the tide as well as the soft sand, and laugh? That I can go outside and work in the garden without needing to wait for someone to make sure I am safe? It is well worth all of the difficult moments.

So however you need to work it in your mind to make it easier for your brain to digest. Treat yourself gently. Don’t be drive by fear that you end up pressing yourself into creating more problems. We’re not Clydesdales that are meant for heavy work…we’re zebras. A bit wonky, a bit goofy, and sometimes even a pain in the ass. But we’re also incredibly resilient in our own way.

To quote one of my friends J. Coursey Willis in his song Inside Me Now (link to full lyrics and music):

And I’m telling you to please keep moving on
‘Cause I’m stitching up all that I’ve got wrong
And I’ll find myself someday …

I’m not giving up just yet
But would you take my hand?
Show me where this long road ends
And I just hope you’ll understand
That I’m doing the best I can
With all of these untended partial threads