On the eve of the close of National Invisible Chronic Illness Week, I'd like to focus instead on caregivers. Whether you are a spouse, significant other, adult child or parent caring for a chronically ill person, your partner's disease will take a toll on you too. Relationships can be difficult when both partners are healthy. A chronic illness can make a relationship much more stressful. We know the person who is ill needs support, but caregivers need support too. Extra burdens, physical and psychological, are shared by both partners. And they are often different burdens even though they share the same source. This is for the caregivers.
The first thing to realize is: There is no negotiating with a disease. We can't control or cajole it. But we can contribute to it for good or bad, depending on how we react to it. The key thing to remember is not to take personally what the disease causes. It's like any other force of nature: the tsunami, the hurricane, the disease... None of them care what kind of havoc they sow in our lives. It's sad that it happens, but what can we do? Our only option is to pick up the pieces of our shattered lives and try to make something new. When we can see the disease as something that isn't malicious or evil, we can gain a sense of constructive peace over the situation. It's like any other hardship. We put our shoulder to the wheel and try to get through as best we can.
The second is something to remember, like a mantra. Remember that you are under duress. Remember this is a marathon, not a sprint. We need to take extra special care of ourselves. We don't have a lot of the luxuries and freedoms that other people have. The extra work is physically draining. We need to practice patience regularly. This is psychologically draining. Exhaustion can make tempers shorten and that's never helpful.
We need to make sure we give ourselves attention and care so we then can give care. Extra rest and relaxation are necessary, but not always an option. Activities we used to enjoy as stress release may not be as available as they were before. Luckily, we live in an age where stress is common, so there are several resources available to learn about coping mechanisms. But one that I would like to emphasize is quiet meditation. It doesn't have to be anything fancy; just sit and do nothing for a little while with no distractions. Find a peaceful place and just relax for a little while. It doesn't have to be long. Ten minutes here or there can be just the pause we need.
We also need to be careful we don't volunteer for unnecessary stress. Being a caregiver can be more than a full-time job. Taking on other unnecessary responsibilities may not be the best thing. If an outside activity brings joy and a sense of accomplishment with that responsibility, that's great. But if the outside responsibilities are draining with little return, it's probably a good idea to stop. Stress can be exciting, but an illness makes enough excitement on it's own. We need to make sure our activities outside of care giving enhance our lives.
Detachment, in my experience, is a wonderful tool for dealing with stressful situations. When I am able to detach emotionally from the situation at hand, I can make more clear-headed decisions. The difficulty is, in the extreme situations that a chronic illness makes, it can be nearly impossible to hold back an emotional response at that moment. In those times, if possible, we need to allow ourselves extra time for making decisions. Often the situation won't allow that. When it's a crisis, it's a crisis. So we just do the best we can, and work on forgiveness towards ourselves afterwards for any mistakes.
Forgiveness is something we will need to practice a lot. A disease will expose all our shortcomings. If there is an area where we are weak, it will show it. Whether it's bad decision processes, limits on our coping skills, old childhood wounds, physical limitations, what-have-you, the situations the disease creates makes those more likely to appear. We must remember we are only human. St. Augustine said: "I err, therefore I am." Our mistakes are a part of life. We can also forgive the situation for making us so off our guard (going back to not taking the disease personally) and in that way deepen our forgiveness of ourselves and others. It's difficult to be at our best when under duress. We work to forgive ourselves, try to learn from it, and try to do better next time.
I strongly suggest to not be shy of support groups. We're not going to have all the answers. It's common to be overwhelmed. You are not alone. This doesn't mean you have to jump into and participate in a community. There are many online forums where people in our situation have gone before and left their experience, strength & hope. A keyword search may be all you need to see a conversation dealing with your situation. And if you do want to participate, you can post your own questions and receive personal responses. Sometimes a stranger can have exactly what we need to hear.
I hope these have been helpful. If you have any other suggestions, feel free to add them in the comments section.