The questions are endless, and the doubt can be paralyzing. Very quickly that small wrinkle of doubt spirals into worry, and then progresses into fear. It happens to every single patient, no matter how long they have been on their journey.
A caregivers role goes far beyond the physical tasks. I depend on my family to be my backbone when I start to doubt myself and have a tough time coping. Every so often I will just get overwhelmed, and sometimes it's the tiniest thing that starts this thought process in my mind. I start to wonder if I will ever get well. This leads me to start to question if I'm doing all that I can, or if my treatment plan is the right one. I get exhausted with being exhausted and I wallow in that feeling of wondering if I will get to know what being healthy even feels like again. It's during these times that my family stops me in my tracks. They start to remind me about "last week," or "last month" when I had a better day. They say, "remember when you could manage to eat two full meals AND snacks not too long ago? And that same day you also walk outside for fresh air? That day came out of no where, but it is proof that your body is capable. You are on the right path."
Next is usually when I retaliate with some more doubt or try to disprove what they said, but never the less they still don't ever let up. They tell me over and over again that I WILL get well, and they will be there every single step of the way. Their eternal optimism and unwavering positivity amazes me. It gives me the will to fight and pick myself up from the pit of negativity that I somehow fell into. I have never once seen my family panic, even when I've been in some of the worst situations. They might do it in private, but in front of me it is a united front that everything will be okay.
The job is a caregiver is unsung work. People focus so much on the patient and give them the glory for being positive or fighting hard, but I'm nothing without my family who gives me the fuel. I run on empty a lot more often then I would like to admit as the months of being sick pile on, but their support is stronger than ever. I realize that half of why I fight is for them. It's because they deserve it. I challenge you to stop and think about the people who love you the next time you want to throw in the towel. Realize that they are counting on you and how much fight they have given and continue to give of themselves on a daily basis. It's not easy to be the strength for someone they love while watching you suffer day in and day out.
To all the caregivers out there, thank you. To everyone who already unconditionally supports someone who is ill, you are the light of their lives even if they don't get a chance to tell you. And if you are a new caregiver and aren't quite sure what it entails, then let me tell you that half of the job requirement is being a positive voice no matter the circumstances. It does not matter how much doubt is being thrown your way, don't give in. Don't ever tell a patient things like, "you're right, maybe you won't get well." Or even worst, "I agree, you aren't getting any better, what now?" Things like that are not healthy or productive for the mindset of a patient. It only makes them feel guilty and helpless, and it is not conducive for healing. Even if it seems true, try to reach deep down and find 1 single positive thing, no matter how small it is which has improved. It can be anything. Find it, and remind them of it over and over again. When the smoke clears if you need to discuss new treatment options or bring up a discussion about a change of plan then do so when things have cooled. No patient can be rational or help themselves when they are in a negative panicked head space.
Doubt is crippling, but it's something that every patient will face. It doesn't make you any less of a fighter, in fact I think it strengthens you to stumble and pick yourself back up. You are forced during that time to look at all the positives and remember the good moments. Some of you might not have a direct in person support system during your illness, but a caregiver can be absolutely anyone, even a friend you met in a support group online. A caregiver is essentially someone who gives you care. It can be virtual emotional support and care, or physical in person care. The idea is still the same. They are there for you in a time of need. If you read this then I urge you to take a moment to thank them, whoever they are, for their support and love.
To my family, thank you endlessly. I love you