When you have a rare, invisible disease that is hard for people to see or understand, it is easy to begin feeling isolated. Even if you are fortunate enough to have a strong support system, and get out of the house on a regular basis, you’re still likely to end up feeling alone. It’s not because your friends and family aren’t trying or don’t want to help, it’s simply because they are different.
You can go to a foreign land and enjoy another culture, and you can really hit it off and care for the people you meet. They might even become your best friends. But they likely won’t be able to totally comprehend what struggles you go through in your own country or culture. Not because they don’t want to, but because they haven’t experienced it.
The chronic illness culture is different than the culture our friends and family live in. They can still be your biggest source of love and support, and they can even be understanding of what you’re going through – but they won’t know what it’s like. That’s okay. And try not to make them feel like it’s not, because it is.
It is totally okay that your family doesn’t know what it’s like to be in the pain that we are in; because if they did, that means they would have had to experience it. I wouldn’t wish my physical problems on my worst enemy, yet alone a loved one. But that doesn’t stop us from feeling isolated.
It is important to talk to people who understand – who fully comprehend what the invisible illness and chronic pain lifestyle is like. It is important for us to know that we are not the only person who lives likes this. It is important to know that we are not alone.
If you are not involved in some sort of support group or do not have an outlet that makes you feel a part of the “Spoonie Community,” I suggest you find one. Realizing that we are not alone and that their others out there that share our struggle can be really cathartic. However, this comes with a warning: do not let yourself become so involved that all you do is read blogs about your disease, talk about your disease, and obsess about your disease. Becoming obsessed over your poor health is not constructive and can hinder your mindset about treatments.
Sometimes, the healthiest thing we can do as Spoonies, is to take our minds off ourselves and our problems and help others. It helps to divert our attention for a little while and remind us that the world is still going around, and has not stopped because of our problems.
You have to work to find the perfect balance between caring for yourself, and not being all about you. The perfect balance will make sure you listen to your own body, but that your body doesn’t make all the demands. The perfect balance will help make a happier you.