The complicated grieving process of chronic illness - An open letter to my hEDS

I live my life with hypermobile Ehlers Danlos Syndrome. I have always lived my life with it. Though, at times, you wouldn't know it. Hell, at times, I wouldn't know it either. That's part of what makes this grieving process so difficult. But there are many parts and pieces that I invite you to explore with me today.

Whether you, too, are trying to come to terms with a chronic illness or you simply want to know more about how mine affects me, let's explore this together. And, let's not start at the beginning. Because my journey truly didn't begin at the beginning. Confusing, right?

An open letter to me hEDS, on grieving:

My grieving process began before I even realized that I had something to grieve.

It began before I knew about you - before I knew I was "sick." It began before I had a name for you. It began when I first was struggling to keep up with my peers and had deemed myself inadequate. It began when I was just a child.

You were with me all that time. A part of me. A disfunction in my coding. An untethering of my every fiber. I've quite literally struggled to hold myself together since I was born. You've been trying to tear me apart.

But I had no idea.

So, for me, the real beginning was more when I realized that something was wrong. It was when I sat back and said, "Wow, you've been sick a lot lately. That flu that didn't affect everyone else much kicked your ass for weeks. You've had bronchitis twice this year. And why are your limps numb and twitchy when you try to be more active?"

I'd already been to the doctor and the ER countless times for digestion issues that led me to lose over 40lbs in the course of a few months. But I didn't know I was grieving yet. I didn't know something was wrong. (You'd think I would have known. But there was a lot, "You're just having anxiety," thrown around and I was primed to believe it.)

I still believed it would get better if I just tried harder - a mindset I held onto for far too long.

It wasn't until things really started to pile on and add up that I actually had no choice but to begin grieving a life I'd left behind. A life of near normal.

Grieving is a weird thing when you realize you've always had this condition

You were there from the moment I was born. You didn't show up one day from a virus or develop over time from years of poor choices. You were always there - just fainter.

I had signs of problems from a very young age. I remember visiting doctors for my legs as young as 10 years old. My appendix burst when I was 11. I was on crutches and wrapped in tensor bandages on various joints at least a few times per year from injuries. I never really thought I got sick a lot (once or twice a year is pretty normal for a kid, right?), but when I did get sick, I tended to get sick for a long time.

The older I got, the worse things became. Shortness of breath labelled as anxiety by one doctor, asthma by another. Getting sick more often. Digestion problems that came and went and, eventually, just never left.

The occasional headache turned into a weekly (and at one point a 3 month long) migraine.

But my idea of normal is skewed because you've always been by my side, pulling me down. I find myself grieving the loss of one aspect of my life or health and then another and then another. It's always changing, flowing, sometimes ebbing, but mostly growing. (Excuse my poetry. Sometimes I can't help myself).

Finding acceptance is a very difficult thing when uneducated doctors tell you it's in your head, or people tell you it's your fault

I thought this part of the journey would be over, by now. I thought that once I had a diagnosis I would be able to stop fighting for healthcare. I thought that once there was a name and a label people would stop denying my reality. I thought that once doctors started to learn that hEDS was a real thing they would take me seriously.

And sometimes, that's true.
But, sometimes it isn't.

And those times hurt.
And they mess with my head.

I am still told that you aren't even real because your genetic markers haven't been found yet. Or, since there has been an increase in diagnoses over the past decade, I have been told I don't really have you and I'm just looking for some kind of attention. Or, since one can never really know what is an emergency and what isn't when you're dealing with an hEDS body, I've been treated like I'm drug-seeking or making it up for attention.

(Side note - It's hard to know when something is an emergency with hEDS because many of us learn to handle high levels of pain and aren't sure which pains are ones that warrant attention. Or we tell ourselves "It's just my EDS" and it isn't.)

And, of course, there are the many many many people who line up to tell me which supplements or dietary changes I need to make to make you go away. They're convinced my own poor choices caused your genes to "express themselves" - or they blame my mom for what she ate when I was in utero. And maybe there is some science and possibility behind it and maybe one day we'll understand why the same lifestyle can genetic pre-disposition can leave one person symptom-free while another suffers. Maybe one day that will pinpoint the one weird (likely Western) thing I do that brings your so far forward, hEDS. But until that day, it simply hurts.

It hurts to run in circles trying every supplement cocktail and find none work. It hurts to change my diet over and over and over. To eliminate so many toxins and free-radicals and whatever new danger exists - and still have you living within me. It's not just because it is exhausting. Most of the time I'm willing to do the work. I'm willing to try.

What hurts is being talked to like I am supposed to somehow be the one person on this planet that obliterates you. The one person to cure hEDS.

How can someone find acceptance when they are constantly trying to find the escape hatch?

Now that doesn't mean I'll resign myself to a life of cheeseburgers and milkshakes and pretend that things won't get worse as a result. I'll eat as clean and healthy as I can given my limitations. But pushing and pushing myself to reach an unattainable goal is a form of mental torture I simply cannot endure any longer.

Grieving isn't linear or concrete when you still have good days

Some days I think I feel almost "normal." Some days I almost forget you are there. Though, I'm not entirely sure what that is anymore.

Some days I can almost keep up with other people. Some days I'll take ibuprofen and it'll stave off most of the sharper pains (the only over the counter pain killer that helps without making me groggy - but also the one I'm warned not to take because it is contraindicated for people with EDS). Some days I'll hold off eating until late in the day so that the stomach pains don't get to me, or I'll clear my bowels with heavy meds for days before to properly handle a day or two eating "normally."

And on these days, the adrenaline of the fun moment takes over. On these days I go for long walks on the beach and play in waves. Or I go on a boat ride. Or I film a commercial. Or I have a booth at a market. I might be covered in kinesiology tape and braces and need the occasional heat pack or ice pack, and I have my EpiPens nearby, and I might be counting every single thing I eat - but I feel almost normal. (See how skewed that idea of normal has become?)

And on these "good days" I tell myself: "You did it! You're getting better! You figured it out and you ARE curing your hEDS!"

And on these days I make commitments to things I won't be able to do when the day to do them rolls around. Because, by then, you'll have made your presence very clear.

On these days I apply for jobs or try to expand my business or fool myself into thinking that I actually can still run a business.

On these days I set myself up for failure. On these days I make commitments that end up burning bridges as I prove myself unreliable again and again.

On these days, I move further away from acceptance and I restart the grieving process... again.

Grieving from a chronic illness is anything by linear

Elisabeth Kübler-Ross discovered the 5 stages of grief we all know so well, today.  Denial, anger, bargaining, depression, acceptance. And we once thought they had to go in that order or that you couldn't repeat stages. That viewpoint seems narrow, these days, and we tend to talk about the stages of grief as being more fluid. But, I truly believe that grieving is different with chronic illness.

Each time that you take something new from me, hEDS, you initiate a new grief process. Is grieving my freedom of walking unaided and without though as bad as grieving the loss of a loved one? No. I've done both. I can compare.

But these smaller losses are still losses. And they add up.

I've lost my ability to walk unaided much of the time.

I've lost many of my hobbies - they're too unsafe for me, now.

I've lost my sense of confidence, control, and power in my own life.

I've lost jobs, clients, careers, and businesses.

I've lost my ability to go places without worrying that something will happen while I'm there (a dislocation, an allergy, a digestive emergency, etc.)

I could continue but I won't. My point has been made.

I move through these stages again and again. I move through them with every new loss. I start over with every good day. I make pronouncements of how I will change to live in alignment with my body and then I have a good day and I throw caution to the wind - I make big plans, and they crumble, and I cry, and I start all over again.

You try to tear me apart, fiber by fiber; tissue by tissue; moment by moment; grief by grief.

Grieving from chronic illness isn't just about getting through losing something, it's about redefining who you are

You threaten to tear me apart. I have spent years trying to find the special combination of physiotherapy and diet to stop you. And I just might slow you down. I might keep the worst of your effects at bay. But I cannot get rid of you entirely.

You will continue to tear apart my body. But you will not tear apart my mind any longer. You will not tear apart my soul.

It is time.

It is time for me to move closer toward acceptance of all that I cannot control.

It is time for me to embrace a future of pre-planning and lost hobbies. It is time for me to have faith that my inability to work will not define my worth as a human on this planet. It is time to stop trying to build business after business; to try job after job; to put my body and my mind through hell to try to keep up and find a creative solution to my health and my financial future.

It is time to make the beautiful art and music and write the beautiful books when I can and leave the rest alone. It is time to share the beauty for the sake of that beauty.

It is time to embrace everything else that makes me a beautiful, wonderful, contributing, worthwhile part of our shared human experience. It may not be something that can be called a job. It may not be something I get paid for. But it matters.

It matters that I am a good person.

It matters that I care about all other people, regardless of their beliefs, backgrounds, etc.

It matters that I do what I can to shine a light in this world.

It matters that I make other people laugh and listen when they cry.

It matters that I am a cheerleader for the incredible things I see people do around me.

It matters that I celebrate my friends.

It matters that I make pretty things that bring forward emotion in others.

It matters that I set a good example of self-care and self-love.

I matter, even with you, hEDS.

I matter.