‘Acceptance’ is the final installment of our blog series on the Kubler-Ross Five Stages of Grief model, as it applies to chronic illness.

It’s a funny thing, trying to write about acceptance when you are nowhere close to being in that headspace. Maybe this is exactly what I need right now. Only time will tell!

Acceptance is not a passive sport. In other words, just because you get to this phase of the grief model doesn’t mean it will just fall magically into your lap. To the contrary, this may be the hardest (and most slippery) of all of the stages. It is highly elusive and hard to hold on to once you feel like you have a good hold on it. Imagine trying to catch a fish with your bare hands. That’s how my mind’s eye sees it.

We should be done with all of the hard work by now! What gives?!?!?

In the previous weeks, we have delved into the other four stages of grief, (denial, anger, bargaining and depression) and talked about how each stage might look with a Hypertrophic Olivary Degeneration diagnosis. Of course, as you progress further from the initial diagnosis, each stage may take on a different look or feel to you. For instance, the denial you felt in the beginning may be something along the lines of ‘these doctors are wrong about what is happening‘. Whereas later, it may show up as ‘sure, I have HOD, but it’s not going to get bad like other people. I am safe‘ at the presentation of a new symptom. Working through each phase allows you to experience the peace of acceptance over and over and over again. If could be viewed as a gift, or a curse, depending on where you are at.

Acceptance takes work. It is not about passively giving up any hope and giving in to the disease. Oh, no, far from it. Acceptance is all about acknowledging where you are in your emotions and being at peace with it. This might mean asking for a palliative care team or even a hospice team. Or it may mean that you are finally ready to complete your HOD Patient Registry to help research endeavors. It may also mean that you are making a decision to talk openly about your life with HOD and connect with community.

…and then something new happens, and you start all over again. Acceptance can be a continuous journey.

Why Should I Accept This? Isn’t That Just Giving Up?

In truth, acceptance is one of the most powerful actions that you can take! Once you are able to move to a place of peace with chronic illness, you have cleared space in your head to continue on your journey. Think of it as emotional constipation. Or don’t. That is up to you. If you are stuck in any phase in the model, you are not able to focus on anything but what you are stuck on. For example, if I am feeling absolutely hopeless because there is little to no research on HOD, how can I then find the resolve to use what tools you have available to you to advance research? Spoiler alert: I can’t! Just being at peace with your diagnosis can help to clear a path to your next step.

In Summation…

Look, no one asked to have their entire life turned upside down by something that they had no control over. It can be, and often is, demoralizing. The phrase that is often bandied about, ‘It is what it is’. I’m not sure anyone hates hearing that more than me, dear reader! The simple fact in this case is that it is correct. There is nothing that anyone can do to change the reality of HOD. Yes, we as a community can offer up our lived experience and hope that science and research will find us interesting enough to study our disease. But we can’t change what has happened in our brain stems. All we can do is decide what each of us is willing to do to make this journey better for the next person who it is thrust upon.

YOUR TURN!

What is your advice to others who are struggling with acceptance? Tell us in the comments! Don’t forget to like, subscribe, and share our posts with anyone who may need to hear it!