As I can quote my lovely friend Kimberley, this is how people look at the chronically ill: "People know that with cancer or aids, people either die or they are okay. Either way, they don't have to deal with that person's illness anymore. With us, it's not going to kill us. But we have it forever". It's hard to have a care system put into place for individuals who are going to be sick for what could very well be a close-to-normal lifespan.
It is a fight just to smile in our circumstance. No one gets a break in this life, especially the chronically and terminally ill. We feel guilt for everything we cannot provide, we feel pain at every second (or second moment...), and we become wrapped up in the world of learning about our illnesses. It becomes hard for us to keep up our outside activities and to maintain friendships outside of the home.
As a result: the world sees us as both depressing and as sickly (which scares many healthy individuals away as they don't have enough education on the matter!).
Even though it may seem like an uphill battle, there are still ways we can pull ourselves up when we hit rock bottom:
- Ask for help. If someone is frustrated with you, reach out to someone else. It is very unlikely that someone near to you won't come in and help you with the basic routine. Self-care, self-care, self-care!! THE MOST IMPORTANT ASPECT of living a good life.
- Set up a support system, and I especially recommend one on Twitter. The #spoonies there are an absolute delight, and my life wouldn't be the same without them.
- Focus on things external to yourself that you enjoy. If nothing comes to mind, try something new that doesn't take up much energy!
- Repeat mantras. Include that you are worth the efforts other people put forth. Just try to treat them all in the best way you can (I recommend thank you cards!).
- Decide how much effort you want to commit to the cause of raising awareness for your illness, versus how much energy you want to devote to your other interests. It's rare to have the get-up-and-go to do both things fully.
- I use humor as a defense mechanism. It isn't perfect, but it is the best I have right now. Laughing, even in awkward situations, can raise your morale.
- Remember that there are always people who have life worse off than yourself.
- Know when it is the right time to bring up a particular subject regarding your health, and when you should really leave the subject alone (I'm still working on this!!).
- Cultivate happiness in the tiny joys of life (dark chocolate is one for me!).
- Be forgiving and proud. Of both yourself and everyone close to you in life.
We all fall down. The non-chronically ill fall down too. These tips are almost as useful for them as they are for us. There is no shame in falling down. By getting back up, you prove your strength.
(Toothpaste For Dinner comic!)