7 Stages I Experienced After My POTS Diagnosis

I think about dysautonomia and chronic illness a lot. Some days, thinking is all I have enough energy to do (there are other days when I don’t even have enough energy to do that).

I came to realize there seems to be a period of mourning with chronic illness. At least, there was for me, and it got me thinking about the five stages of grief and loss. So, after looking through those articles as well as a few others, I thought I’d put together my personal take on the stages of chronic illness as it pertains to my experience and experiences I’ve heard from others with dysautonomia (specifically, postural orthostatic tachycardia syndrome, or POTS).

Some stages may overlap, some stages may not apply and some stages may not be listed. Plus, differing types of chronic illness have different stages. In short, this is just what I have come up with after having a day or two where I had enough energy to produce coherent thought.

1. Relief/Validation

While the first stage of grief and loss is denial, I think most people with dysautonomia initially experience some sort of relief because, typically, it takes nearly six years on average before one receives a proper POTS diagnosis. Six years! I have also heard of people spending 20 years searching for an answer to why they feel the way the do while doctors have repeatedly told them it’s all in their head. Not being heard or believed is horrible, but knowing — in your bones — something is affecting your body and not knowing what it is brings its own kind of dismay. How do you fight something when you don’t know what it is?

Once “postural orthostatic tachycardia syndrome” came along for me, I was relieved. I was right — I was sick. And now, with this new name, I could turn all my focus, strength and determination toward it. I knew what I was fighting against.

2. Guilt

In our new world, we can hardly do anything we used to, especially at the beginning. We are more than likely completely debilitated or have been for years. Everything reminds us of what we can’t do and who (we feel) we are letting down. There is so much we have to miss out on now. So much we want to give to our family and friends and children and dogs, and yet we can’t. So they have to shoulder much more than usual, they have to miss out on seeing us, they have to have more responsibility and they have to forgo walks and time together. In this stage, all we can see is how our illness is affecting the people and things we love.

3. Anger/Denial

We can’t stand feeling the guilt, so we stubbornly push ourselves to the max. We don’t care if we feel like crap. We don’t care that we know we’ll feel like even more crap because we’re just too pissed off about not being able to do the things we want to do and be with the people or pets we love. So we just pretty much give dysautonomia a big middle finger and go. Usually, this makes us even far worse off and we just wind up feeling guilty 10 times over. Which leads to…

4. Depression

Depression with a chronic illness is scary. I tried to do some research to learn more about depression and chronic illness, but I couldn’t find much out there pertaining to dysautonomia. However, it is a real, definite thing. Not only in potential chemical aspects due to the body-mind correlation, but also because we have experienced a huge loss. We had a life once and, now, it is different. It may forever be different. We don’t know. That’s some heavy sh*t to deal with day in and day out. I think it’s healthy to mourn the lives we used to have, but that doesn’t mean our sadness will dissipate.

5. Acceptance

This one is tricky. I haven’t necessarily accepted dysautonomia in the sense that I will have it forever (maybe I need to? I’m not sure). But I have had to accept that I have limitations. These limitations can change daily — change by the moment, even — and I am stubborn enough that I have to continually remind myself of them. To accept them or else I will just wind up making myself sicker (see anger/denial). I also continue trying to accept that limitations aren’t necessarily bad. I used to think they were, and some days, I still get frustrated with them. But they have made me conscious of what is important to me. What is worth spending energy on and what isn’t. And learning to be as kind and patient and gentle with myself as possible.

6. Fear

If we’re lucky, we reach a point where we are able to function a little bit more. And we carefully live life to the fullest we can without pushing past our limitations. However, there is always that quick change of weather, the “bug” going around, or nothing we can outwardly identify that sends us back to bed, back to the couch, back to memories of how it was at the beginning. And we almost literally can’t handle the thought of being back there. We’re scared that this might be it — we might be stuck where we once were and never able to get back to the place where we were fighting and living.

7. Management/Plate Juggling Stage

Here is where we usually have found some sort of combination of things that, if we’re lucky, have let us maintain some semblance of functioning. However, I have discovered that it is impossible to keep all plates going at once (like if I remember to eat well, take my meds, and stay on a sleep schedule, I forget to drink enough water. If I drink enough water, eat well, remember meds and try to exercise, my sleep goes to crap, etc.) I think all stages can overlap with this one at some point (fear and acceptance especially), but I also think this stage is constantly shifting. We’re still trying to figure out which meds work and which don’t, try new things, eat different foods, etc., because, let’s face it — the medical community is light years behind on this kind of stuff and we’re basically just trying to figure out all this on our own.

I imagine I’ll add to this list as I experience more and learn more. I have known days where I have gone through all of them — hell, single hours where I have gone through all of them. Some overlap. The order changes. There are probably more. But sometimes, with something so huge as a diagnosis like this, it helps to see things broken down a little bit.

What do you think? Did I miss anything?