It took awhile but after 25 years with my chronic and invisible disease, I’ve accepted that living with any chronic illness is a team sport. Of course, this realization didn’t come easy. It took trial and error and many many attempts to do everything I can on my own. Let me backtrack about 8 years ago to when I insisted on doing everything by myself.
I used to want to do everything by myself, so much so that when I was going through some of my hardest times, I would go hiking and camping by myself even while I was sick. You are probably asking, "Why would anyone with an illness want to do such a thing?". Personally, I wanted to try because it gave me a sense of independence and accomplishment by spending 3-4 days alone in the woods, and not being able to rely on anyone else. And yes, I can’t deny that I still enjoy that feeling of independence. When you’re dependent on others for so long, it’s nice to know you can do something (anything) alone.
Over the last 5 years, I slowly came to realize that this doesn’t have to be the case with chronic illness. I can still get a great sense of accomplishment by living with my disease while getting the help from others. This change in attitude came when I was going through one of my hardest recoveries, after one of the most difficult surgeries I have ever had. At this time I started to think, why should I go through all of this alone? Why not lean on my support network or what I like to call “Team Kickass” when needed? The answer is no one really should have to go through these battles alone.
It all started after my proctectomy surgery (the removal of my rectum) to make my ostomy permanent. I was told going into the surgery that this would be one of the hardest recoveries anyone can go through and that the pain level would be higher than past surgeries. This was 100% accurate and right when they took out the epidural, the pain was an 8+ at least. The complications added to this recovery, as I had to live at my parent's house, in their bedroom, near a bathroom for 6 months, while having a visiting nurse service come to take care of me 1-2 times a day.
As you can imagine, going through all of this at 31 wasn’t ideal and is not the way life is supposed to be. But it allowed me to change my attitude towards getting the help I needed and accomplishing the goals I knew I wanted to set out for myself. The ultimate dream, while I lay in bed getting my wound packed by the visiting nurse was to become a long distance triathlete. Would this be possible on my own? Could I actually become well enough with my disease to do this at all? The answer to both of these questions is yes, but the first one is the more important questions, and one I started asking myself all the time.
Slowly I began to realize that while the actual sport of triathlon consists of an individual completing a swim, bike ride, and run on their own, it’s actually a team sport. And this is when I realized that, so was living with a chronic illness. You can do parts of it on your own, but it’s so much easier when you have the support and help of your loved ones around you. So here are a few things I learned during this journey.
Communication is KEY - When trying to live with a chronic illness, communication is the key to making it work. It not only makes it easier for yourself but also those around you. If you talk about what is going on and what you might need, it helps your support team get through everything. It will also help everyone know what you may need and where they can assist you to reach your goals. This might be getting out of bed after a surgery, going for a walk in your neighborhood, or completing a triathlon, but the key is to communicate.
Your Team Wants to Help - Once you start talking to your support team about what is going on and what you would like to do, they want to help you get there. Have you ever seen those ESPN pieces where they show someone overcoming their disease to make their dreams come true? Most of us have. Next time don’t just look at the face of the person who is overcoming their disease, look at the faces of the people who are helping them do it. It’s amazing to see the pure joy and support as they see dreams come true.
You're Going to Need Support - Whether it is walking around the hospital floor, starting to go back to work, or starting a new activity that you’ve always wanted to do, you will need help. I thought I might be able to get through my proctectomy myself, but that wasn’t the case. I thought I would be able to get back to a normal life by myself, but that wasn’t the case. I thought I would be able to become a triathlete myself, but that wasn’t the case either. Even though I would have preferred to do all of these things on my own, I realized that it was not only easier with the help of others, I realized it was more exciting when the goal was reached. There will be hard days when you need some assistance or a push, and those days are key to still moving forward to your goal. Lean on your team when you need this support when you reach your goal, you’ll be happy you did.
It took me years and years of trying to do things on my own to realize that there was no point in being stubborn and trying to live through all the ups and downs by myself. There are going to be highs and lows along the way, that is the roller coaster ride we are on. It’s not going to be easy, so why not take the help of those around you that want to be there for you.
I know what you’re thinking, “I don’t want to be a burden to them”, but take the lesson that I learned from all of this. They love you, they want to be there for you, and because of these feelings, you aren’t a burden at all. In fact, you probably inspire them to do more in their own lives.
So don’t go it alone. Talk to your loved ones, let them know your goals, let them know you’d like their help when you need it, and tell them how great it is going to be to celebrate together when you cross whatever finish line you set out for yourself. Then enjoy the really fun part when you get to name your team together!