13 Things Chronically Ill Women in Their 20s Should Know

Here are my words of wisdom and telltale advice for us ladies who are trying to conquer college courses, graduation, future careers and all of life’s offerings:

1. You are not the sum of your hospitalizations, emergency room visits or doctor appointments. Your character, your worth and your value as a human being does not depend on your health. Your character, your worth and your value as a human being depends on your definition, your interpretation and your perspective of the experiences you have lived.

2. You are not identified by the medical numbers on hospital bracelets nor are you identified as the “patient in room 207.” You are identified by your first and last name. That’s it. You are not identified by your illness, your disease or your symptoms. Not one bit.

3. The number of medications you need to keep your symptoms at bay should not dismantle your strength towards medication maintenance adherence. You are trying to achieve a lifestyle with the least amount of symptoms possible while maintaining functionality in life.

4. You did not choose your disease. Your gene pool activated the genes within your strands of DNA, and you are simply navigating the hand you were dealt.

5. You may feel the emotional bitterness, resentment, anger, shock and sadness of being chronically ill and not healthy like your friends and family, but only for a little while.

6. The aches and pains of sitting and walking to class, the chronic fatigue of running errands to Target and Cub or the scheduled coffee dates at Starbucks can all be cancelled if you are not feeling your best. Although your “best” is a different definition from your healthy peers, you call the shots regarding what you can handle and what you cannot. You are in control of your energy and where you want to put it.

7. You are not to blame for the medical circumstances you are encountering, nor should you feel guilty for the medical resources you’re using. You are trying to achieve a sense of normalcy with a limited number of medications, treatments, appointments and procedures as possible.

8. You are not an “attention hog” by talking about your medication side effects, your new doctor or your new treatment therapy. What you have to express about your own life should not be punctuated out because someone does not like to hear what you have to say.

9. The number of doctors you have does not mean you have more problems. Sometimes one diagnosis needs multiple doctors with perspectives from a doctor of every specialty.

10. You are not alone. Connect with the community. Connect through support groups at the hospital. Connect through others who are experiencing a similar journey to yours.

11. Speak up because having a genetic disease with questions that are left unanswered is a scary and difficult mountain to face alone.

12. Express your fears regarding your symptoms and the course of your disease. It is intimidating when a disease and/or symptoms dictate what your plans are for the day, the next weekend, month and years to come. Diseases and symptoms have a way of ingraining themselves in your daily schedule, and sometimes it is overwhelming when years of planning your life career are thrown down the drain. Put your disease in perspective of what you want to achieve and what you want to achieve in perspective of your disease.

13. Share this list with a loved one or friend, so they too know where you stand in your battle with your disease.