The Importance of Both Acceptance and Hope

Life with chronic illnesses can be brutal sometimes. When your illness is incurable you have to balance acceptance of your current condition with hope for a better future, and that can be a challenging balance to find. But both acceptance and hope are so important.

I want to clarify that acceptance is helpful once you have an appropriate diagnosis and treatment plan. If you are still trying to sort out what’s going on please keep going. That’s the first step in all of this. Do not just sit back and think, “well this is just life now” if you haven’t gotten a reasonable amount of help from doctors yet. That means a diagnosis that at least explains most of your symptoms and a treatment plan worked out by your team of doctors and yourself that results in a quality of life that is sustainable.

Once you are past the diagnosis stage however, acceptance is a really important piece of this puzzle. This is a major life change and it would most likely be helpful to see a psychologist. I think that literally everyone would benefit from therapy, at least for a bit of time, but it is especially helpful if you are going through major life changes. This is a serious grief process and grief is just hard. Seeing a counselor for something similar does not mean you have mental illness, so don’t let that thought be a barrier to seeking help.

Acceptance in the case of chronic illness means having realistic goals and ideas about the future. It means taking a good look at the realities of your limitations. And it means finding a way to have a good enough quality of life within those limitations. The game of chronic illness is to find a million little things that all help a little. Some of those things may be pharmaceuticals, many will be lifestyle adjustments, and some will be readjustments of your way of thinking.

Finding all those little things that help can take a lot of time. In fact, you may never actually be done with that. For me it took about 3 years from when I was diagnosed until I reached a point where I felt I had a sustainable quality of life. At the time I wasn’t totally satisfied with my life but if I had to keep living at that level of disability I could do it. That became my baseline. I occasionally dip below that but I’m often at or above that level. When I do dip below that I know it’s time to get proactive about finding more help.

When you are dealing in those million little things it can feel really slow and frustrating because it doesn’t feel like you are moving forward at all. But you are. Slow progress still counts, even when it needs to be measured in the timeframe of months and years rather than days and weeks. Try not to get discouraged. Just keep looking for little things that help a little bit. Eventually they start to add up.

On the other side of the spectrum is hope. You shouldn’t give up all hope for a different future. When I was born, POTS didn’t even have a name yet. Now there is a lot more awareness from doctors and a good handful of potential treatments for various symptoms. Research is currently being done into the root cause of POTS with treatments for the root causes to follow. I remain hopeful that in 10 or 20 years things could be very different. I’m in my early 30s and very well may live another 50 years. That’s a lot of decades, potentially with more help than I can even imagine right now.

The balance comes in living your life where you are right now, in the world you are currently existing in. You live now but you can still be hopeful for a better future, and you should be. Check back in with your doctors every few years to see if there are new treatment options. Read up on new research studies. But don’t let it take over your life. Live now and hope for the future.