If you have ever been diagnosed with a chronic illness, you remember the first time a doctor tells you that the pain you are experiencing may NEVER go away, may never improve, and may progressively worsen as time goes on.
I sure remember that appointment... I was 14 and thought I simply had the flu. When I first heard the word "inflammation" I was confused because I thought it meant that something was on fire.
I had to come to terms with the idea that I might never feel better. Ever. They also could not tell me WHY I was sick. I had not known that you could suffer from something that had "no known cause" and "no known cure". How can that be? How can I be in this much pain and have something wrong with me but not have any clue as to why?
Obviously I learned to adapt. I found that balance of acceptance and perseverance that kept me going.
What I have noticed over the past 16 years is that there are several different ways people cope with being diagnosed with a chronic, painful, inflammatory, auto-immune illness. Some people become hermits and spend most of their lives at home, never socializing or getting involved, struggling to eat and struggling with depression. Other people don't seem to let it affect them and do and eat everything, almost ignoring the problem and pretending to be fine, but suffer in silence. Some become self-destructive. Some use their experience to become health care professionals to help others.
There are two types that I want to talk about today... The two that seem to stem from a specific decision:
1. Accepting the diagnosis or
2. Pushing back against it.
There are fundraisers everywhere you look. People are always raising funds for research to help find a "CURE".
My outlook is that I prefer to raise funds simply for research - research to help find better medication options, to help discover a cause, and *hopefully* help to eventually find a cure.
How are they different?
One thing I have noticed is that many people who fight and fight and fight for a cure all the time, as inspiring and commendable as it is, can also sometimes be prevented from accepting their fate. Their tireless work takes a toll and breeds a specific kind of resentment - they end up expecting to find the cure and become agitated the longer time passes without its discovery.
Why is this a problem? In my opinion only, it seems to foster a very intense and specific hatred of their disease. They expect a cure, and when you expect your pain to stop and it doesn't, you hate it more and more until it consumes you.
Now, everyone hates the chronic illness they have been given. It sucks. But at some point, in order to focus on other parts of life, there has to come a bit of acceptance.
Too much acceptance, however, can have the opposite effect. Accepting without researching improved medications or therapies can make you feel isolated and hopeless. If you work towards nothing, then how can you have hope that things *might* get better?
I think it is important to have a balance of the two. Understanding that we may never find a cure in our lifetime - we ourselves may never be cured - but we can work towards better treatments and information and can hopefully help to provide a cure for the next generations.
We need people who work tirelessly to find a cure. We need people to continuously research on our behalf. What I hate seeing is how angry some people are because they keep expecting to soon be cured. They never move on. They rarely focus on anything else. The anger and resentment and the desperation to find a cure consumes them.