Don't Ignore the Problem

Accepting the reality that you have an illness, which has to be wisely managed on a daily basis, is not always an easy thing to do. As a result, some people choose to become unpleasant individuals. They may allow anger and negativity to be the driving forces in their life. Opting to have this kind of attitude is not only harmful to you and damaging to your quest for a life of peace, but it also hurts everybody around you.

For me, accepting my illness includes: choosing to be open about it with those who know me; acknowledging that there’s no shame in saying, “I have an illness that affects every aspect of my life;” it means finding ways to make peace with the various complications that come with having Sickle Cell Disease. I’ve accepted the fact that there are times when I am able to do the things asked of me—as well as the things I want to do—and there are times when I can’t. This is the reality of my situation and I’m at peace with it. Most of the time.

I think it’s important to ask yourself, “What does it mean to accept my illness?” and “Have I accepted mine?” Both require that you look inward to answer.
Part of accepting your health condition comes by not ignoring it. If you're reading this blog, I think it’s a pretty good indication that you have, or are at least trying, to come to terms with this thing called Sickle Cell.

When people ignore their problems, often they hope the issue will go away on its own. They do what they want to do in spite of the consequences, believing there will be no consequences. What ends up happening is they magnify the problem and make things worse for themselves. After all, you wouldn’t ignore a broken arm with a bone sticking out through the skin and hope it self-corrects. So, why ignore Sickle Cell? It can be just as dangerous if not given proper attention.

Accepting your illness also means learning to manage it. It means making whatever adjustments you need to so you can be as healthy as possible.

Managing Your Disease

When I was about twenty-five, I made a routine visit to my heart doctor. A blood test revealed that my potassium level was dangerously high. I was about one point away from having a heart attack. My doctor immediately put me on various medications and told me I had to stop eating high potassium foods like tomatoes, potatoes and, basically, all fruit except apples and grapes. Needless to say, I was kind of upset. All these forbidden foods were things I loved to eat and did so often.

For a time I was really angry and depressed because I loved those foods and didn’t want to give up yet another enjoyment in life; but I had little choice. With time, as my potassium level returned to normal, I learned I could still eat those favorite foods, as long as I did so in small amounts and only occasionally. Just don’t tell my heart doctor. Still to this day I enjoy those foods, but I’m wise and cautious not to eat them too frequently or in excess. Because I’m careful, my potassium level is still were it ought to be.

There are many things like this in my life, as I’m sure there are in yours; adjustments you’ve had to make in order to manage your illness. The process of change can sometimes be a bumpy emotional journey, especially in the beginning. However, if you educate yourself and learn to adapt when necessary while keeping a positive attitude, the journey won’t be as difficult.

Do What You Must

The idea of doing what you must for the good of your health goes right along with “Managing Your Disease.” This means doing what is necessary to stay healthy without feeling guilty or ashamed about doing so. Now, I’m not saying you should cop an attitude, and demand everybody bow down at your command to fulfill your every need, though that might be nice. What I mean is this.

If you’re in school and have special privileges to eat and drink in class—a topic I will discuss further in Section 15" "Going to School"—don’t be embarrassed about using those necessary privileges. If you have an open pass to go to the restroom as you need, use it responsibly and don’t feel bad for doing so. If you have a need to take a coat with you everywhere you go so you don’t get cold, try not to worry about what others think. If you are out with friends and need to stop to eat or rest, speak up and take care of yourself.

Do what you need to do to stay healthy. Take care of your body and medical needs. Don’t risk a pain crisis or hospitalization. Chances are, if you’re open about your health problems with your friends—which I’ll talk more about in Section 7: "Telling People You Have Sickle Cell"—you won’t have to worry about being embarrassed. Your friends will want to help you stay healthy.

It's a Part of You

I want you to understand, Sickle Cell Anemia does not define you as a person. You are not a disease. It is, however, a big part of who you are. Living with the burden of Sickle Cell certainly does have a massive impact on you as an individual. It can shape your perspective in life and your view of the world. Though your illness does influence you in these and many other ways, you have a choice; you decide who you are as a person; you decide how Sickle Cell shapes your personality. Will you allow it to make you angry and bitter? I’ve seen this first hand and it’s what motivated to me to create this blog. Or will you use your illness to become a compassionate human being?

Through the things you endure as a result of living with Sickle Cell, you are given an opportunity to grow in ways most people don’t. Perhaps you, like I, at a very young age have learned life lessons and observed the human condition in ways many people never will. Let these experiences shape your character in favorable ways. Use those experiences to help other people. In doing so, your ability to patiently endure your trials will be increased and you will become a positive, rather than a negative, influence to the people in your life.

Control in Your Life

The only predictable thing about living with Sickle Cell is that it’s unpredictable. Learning to live with this unpredictability is another aspect of accepting your illness. It’s human nature to want to control the things in our life. Speaking from personal experience, I know how easy it is to believe you have no control over your health, body or existence. It can be a frustrating and helpless feeling. The truth is you have the most important kind of control. You have control over yourself and how you manage your health. You control how you act and react to things. You control how you treat other people.

While you may not be able to govern when you have a crisis or how you physically feel one hour to the next, you are in charge of how you deal those crises. Self-control is of the greatest importance in life. So, in the words of Yoda, “Control, control, you must learn control.” Yes, I admit it. I’m a Star Wars freak.

Exercising self-control over one’s temper, diet, words, thoughts, actions, and countless other things, is a necessary part of life. It’s especially critical for those of us living with a chronic illness. For example, failing to use wisdom when playing sports can lead to unnecessary hospitalization. Lacking the resolve to stay home when you’re having a crisis can cause greater pain. It’s through self-discipline that you’ll be able to enjoy greater stability of health.

Nearly everything I share with you is linked one way or another to control. As you continue to read, try to think of ways you may be able to improve your life by regulating certain actions or habits that may be harmful to your wellbeing. It’s my hope that as you do so it will be less challenging to find joy in your life.