10 Positive Aspects of Being a Caretaker to Someone With a Rare Disease

Several years ago, I became a caretaker when my husband Joe was diagnosed with Charcot-Marie-Tooth disease (CMT), a rare hereditary peripheral nerve disorder that actually has nothing to do with teeth. While the symptoms and degree of severity can vary from person to person, CMT generally weakens the hands, feet, and lower legs, and causes difficulty with balance and walking. Pain and fatigue also often enter the mix. Months of unexplained, severe pain eventually led to Joe’s diagnosis, and we’ve gradually had to come to terms with the fact that this is not going to magically go away.

There is currently no cure for CMT, and it is a progressive disease. My life drastically changed as I found myself accompanying Joe to doctor’s appointments, visiting him during hospital stays, navigating the wonderful world of health insurance and medical bills, and generally running our household. While there have of course been downsides to this turn of events, there have also been some obvious and not-so-obvious benefits. I can’t speak to Joe’s experience, but I can reflect a bit on my new life as a caretaker. I found that once I started thinking about the positive impacts Joe’s illness has made on my life, I was able to come up with a much longer list than I initially expected.

1. It has made me more empathetic to the struggles of others. I really have learned about the importance of empathy in relationships these past few years. A relationship between a healthy person and a person with a chronic illness will clearly not work without empathy. Joe has said that being sick has made him more aware of what the elderly and others with chronic illnesses are going through, and some of this has rubbed off on me too. Being a caretaker has also made me a more compassionate person in general. I’m more likely to cut people slack, because you never know what sort of hardships people are going through.

2. It has brought my husband and I closer together. Our bond has definitely gotten stronger since chronic illness has become part of our lives. Of course, there are still days when I don’t feel like being a caretaker and wish I could just forget about CMT for a while. I’m sure Joe feels this way sometimes too. Of course, sometimes we lose patience with each other. But our instances of getting on each other’s nerves never seem to last that long anymore. Since we’re both facing a huge challenge, we have to let go of these things in order to keep our strength for the important stuff. Honestly, I’m so worn out most of the time that I don’t have the energy to stay mad about unimportant grievances.

3. I no longer have the energy to hold grudges. I no longer have the energy to hold grudges against Joe for something he said five years ago, the friend who didn’t return my text, the person who cut in front of me in line at the supermarket, or anybody else who might happen to make me mad on a particular day. This has really made a positive change in my life. Of course, I might make a point to avoid certain people if they continually behave badly, but I don’t carry anger against them around with me like I used to. I have an easier time moving on. Also, since I no longer have the things that waste my energy, maybe that means I’m actually saving energy somehow. This applies to other parts of my life, too.

4. I don’t sweat the small stuff anymore. I’ve noticed the everyday annoyances that used to bother me don’t as much anymore. Bad traffic? Hey, it’s just part of living in a big city. Bad weather? So what? It’s part of living on this planet. Trains not running on time? I will survive. I find myself thinking those three words—I will survive—a lot lately. I know that I’ve been through a lot, and I can continue to endure. And a groovy disco song can be my personal soundtrack.

5. My self-esteem has improved. So I put on a couple pounds this month? No big deal, I’ll probably lose them next month. I’ve got a pimple forming right in the middle of my chin? That’s OK, it makes me look younger. I used to get really upset about these things, but not anymore. Appearances aren’t as important as they used to be. I realized that when you’re dealing with life, you can’t always look perfect. At least I am alive, and that’s saying something. I also feel proud of myself for being able to help Joe. I realized that I can do a lot. Yes, I can be the breadwinner when Joe isn’t able to work. I can be a supportive wife and friend. Strangely enough, I can understand how health insurance works and keep up with all the medical bills (most of the time). Hey, I am pretty amazing after all.

6. It has enhanced my enjoyment of the little things in life. Sometimes you have to enjoy the little things in life, because sometimes that’s all life gives you. But, that can be enough. I realized I can still be happy even though we’ll probably never be able to take exotic vacations, buy our dream home, or do many of the other things we’d hoped to do. In our pre-CMT life, going out for pancakes and taking a walk in the woods would have been considered an average Saturday. Now we consider that a great Saturday. Just talking and laughing with each other during a quiet night at home seems fantastic after a stint in the hospital. Our little condo doesn’t look so bad after all. A cup of tea and the birds chirping outside the window are little luxuries.

7. It has given me a new appreciation for the big things in life: family and friends. Big challenges like illness give the people around you the chance to step up and show how great they can be. Of course, there have been times when I’ve felt let down by people. But there have been countless other times when I’ve been surprised and moved by kind words and gestures from family and friends. Getting special visits from people even though you know they are
super busy. Knowing that someone took the time to send you a nice email or card, or even a gift here and there. Seeing how important these awesome people have been in my life has motivated me to keep on treating my family and friends well.

8. I have met some great people. Thanks to the internet, Joe and I found out about the Charcot-Marie-Tooth Association (CMTA). In addition to the wealth of information about CMT on their website, we also got connected to the people in our local CMTA branch. We meet up several times a year to talk, share information and personal stories, raise money for medical research, and hang out. Getting to know other people who also live with CMT has been such a reassuring experience for us. It really helps to know that other people out there are dealing with the same physical symptoms, the same lack of understanding from others, the same emotional and financial challenges, and yet keep on living their lives. It helps us believe that we can do it too. Also, they are just nice people who I wouldn’t have met otherwise.

9. It has helped me see that the good people outnumber the bad. Joe always has to use some type of walking aid now. Depending on what we’re doing, he may use a cane, a walker, or a scooter. But he was a fairly healthy person who didn’t have to use these aids for most of his life, up until just a few years ago. We’ve both had to adjust to his new ways of getting around in public. I was pretty worried about this initially. I was basically expecting to get challenged by passersby every time we parked in a disabled spot, get honked at by angry drivers for not being able to get through crosswalks quickly enough, and snickered at by mean Dennis the Menace-type children everywhere we went. I can gladly say that this has definitely not been the case. More often than not, people have treated us decently by holding doors, letting us have the right of way, and generally being patient as we move along at our slower pace. I could attribute this to the fact that we live in the Midwest, but truthfully I’d have to say that Joe’s illness has shown me that the good people really do outnumber the bad.

10. Finally, I have a better understanding of the fleeting nature of all things. Now I’m going to get a little deep. Excuse me while I get out the incense and crystals. You could say that I’ve had experiences in my 30s that many people don’t have until they are much older. Being there for Joe through several surgeries, numerous hospital stays, and endless doctor’s appointments, though, has given me a new appreciation for the value of life. There’s nothing like a serious illness to remind you that everyone’s time on this planet is limited. Everything is temporary, including health and life. I will probably become very ill someday too. And we will all die eventually. But maybe living while remembering that nothing in this life will last is a better way to live. It helps you remember what’s really important.

Being a caretaker has changed me. I can’t imagine a different life now. If Joe was somehow miraculously able to have a full recovery, I hope this new perspective I have gained would still remain.

I hope I haven’t sounded too much like a motivational speaker. I hope that Joe, others who live with rare diseases, and their caretakers can see some of the positives aspects of chronic illness. I know it’s hard, when pain and fatigue are constants. But this is our life, and it’s not all bad.