Four years ago—totally out of the blue—I became ill. My skin turned into red, bumpy, scale-like patches. And while most of the doctors differed in their diagnoses, they agreed on one thing: I had an overactive immune system that caused my body to attack and damage its own cells. With no cure available, I was prescribed antihistamines (allergy medication) and strong steroid creams to prevent the rash from spreading all over my body.
At first, I was determined to get well. I was going to be one of those people who miraculously healed themselves. I spent long nights researching possible causes of my rash (which was getting worse by the day), I went on a 40-day-long water fast during which I collapsed from lack of energy. I took all the recommended supplements, and I saw numerous doctors and alternative practitioners. However, the mirror was a constant reminder that I wasn't getting better. My body was betraying me and I wasn't able to do anything about it.
There were good days and bad days.
On bad days, I didn't want anyone to see me. I felt sick and embarrassed by my appearance. Getting dressed was often an impossible task. My body was so sore, and covering myself with clothing just seemed to exacerbate the pain. Lying in an oatmeal bath for hours was often the only way to numb the pain and soothe the itch from the rash. Missing work became inevitable. My love life suffered. The torment from the pain and itch completely consumed me. If I wasn't crying all day long from the physical pain, I was crying myself to sleep at night from the mental anguish.
But I knew I couldn't keep wallowing in despair. I realized the only thing I could improve about my situation was my attitude. And feeling sorry for myself definitely wasn't helping anyone. The bitter truth was that I didn't have control over my rash. The only thing I had full control over was my reaction. I needed to stop clinging to the past and thoughts of a better future and embrace the present.
Coming to terms with my imperfect body
There are days when I experience no symptoms. That's when a glimpse of hope that maybe I am healed appears, but then the rash comes back and my dreams of healthy skin are crushed yet again. Am I ever going to stop hoping for flawless skin? Probably not. But as the pain softens, I am getting better at accepting the truth and facing whatever comes next.
Here are some of the lessons I learned when things were especially difficult. My hope is that these tips will empower you to find peace with your chronic illness.
1. Own who you are.
I used to be afraid to think that my illness defines who I am. How many times have you heard someone say, "don't let illness define you"?
But how can it not define you? A disease that affects you every single day isn't something you can just ignore or distance yourself from. While you're not your Alzheimers, your fibromyalgia, or any other disability—it is part of your identity. A chronic illness changes you and your very way of life. It's a full-time job; it dictates whether or not you can spend time with friends and family, if you make it into work, and when your laundry gets done. Your illness may not define who you are, but you have to accept that it's part of you.
2. Stop trying to cure yourself.
Finally accepting that I have a chronic disease didn't make the disease go away, nor did it mean anything about the future. And just because I've accepted reality doesn't mean I'm not still looking for a cure. But when you accept what is, you become free. Free to be at peace with the unwanted circumstances of your life. Acceptance means you've reached a new level of understanding of the path you are walking. It's taken me over a year, but I believe I've finally gotten there. I've realized that I can't fight a battle against my skin—I have to be its ally.
3. Learn your limitations.
It might be that you simply need to progress at a different pace to reach your goals. You may need to reassess whether you can accomplish what you set out to do at all or if it's even the right move for you. Indeed, your illness may be calling you to examine your life to date. The bottom line: you don't get to decide what cards you are handed in life, but you do decide what to do with the cards you're given.
Slowing down is vital for your body and your mind. Clinging to old expectations of yourself will only hold you back. So do you need a nap? Take one. Need to stop the task you're working on because you're in pain? Do it. Listen to what your body needs and make your health a priority.
4. Be kind to yourself.
Dealing with the side effects of chronic illness takes tremendous courage, perseverance, and strength. Thoughts swirl, fears crop up, self-pity creeps in, and sometimes you can't stand being you. But you are the only "you" there is—unique and beautiful. So whatever emotions arise, send some loving kindness to them. When you're kind to yourself, something shifts inside and it changes how you react.
5. Don't let anyone else define you.
The worst part about being chronically ill isn't the physical pain, it's the emotional burden that goes along with it. You learn to tolerate the physical pain, but the feeling of no clear end in sight, no light at the end of the tunnel, is immensely debilitating. When people ask how you're doing, you can either lie and say "fine, thank you" or horrify them with honesty.
Chronic illness is hard for people to understand because you might not "look" sick. Some people might even suggest that it's all in your head and you just need to push through it. But these comments must never define you. Don't let one single comment prevent you from being yourself. Negative people and their hurtful comments can be very difficult to deal with, but think of all those comments as tools to become stronger. If people are mean to you, it's because they still have more to learn about life. Remember that being sick or tired isn't a flaw—you don't have to prove your worth to anyone.
When times get tough, get tougher.
Dealing with chronic illness can be tough at times. It's like climbing Mount Everest over and over again. Most people can't imagine how difficult it is to live in a body that just doesn't cooperate. You may feel tired, desperate, ashamed, and embarrassed by your illness. And that's OK. This may not be the life you expected, but it's yours. So take a deep breath and make your life worth living. After all, as Vivian Greene once said, "Life isn't about waiting for the storm to pass...it's about learning to dance in the rain."