Posted in Chronic illnesses

My Eight Rules to Living with Chronic Illness

Being Sick vs. Being Chronically Ill
Originally, I wanted to call this post “the rules to being sick,” but it occurred to me that living with chronic illness and being sick are two different things.  When people think of being sick, they think of the time they called off work because of stomach bug or the flu.  People with chronic illness don’t call off work because they just don’t feel – we go in anyway since the pain, the fatigue and the feelings of just feeling plain ill and weak are a daily occurence.  Therefore, when it comes to being sick, there are no rules except for staying in bed and calling off work.  When it comes to being chronically ill, there are many rules, but these are the ones that I know all to well.
My Rules
Like Special Agent Leroy Jethro Gibbs of NCIS, who has his Gibbs’ Rules, I have my rules for living with chronic illness. 
Rule Number 1: Find answers and trust your instincts.  Getting a diagnosis can average about three years and in some cases up to ten depending on the condition.  I started having fibromyalgia symptoms as far back as my teen years and in my 20s, I started visiting doctors trying to make sense of what happening to me.  My joint RA symptoms started in 2005 and it took me three years to get that diagnosis.  I remember having to take off my shoes when I was driving because the joints in my toes would lock up.   In 2008, days after giving birth to my now two year old, I woke up to a nightmare flare-up and the realization that my life was about to change.  
One of the hardest things that any of us had to do was to endure years of trying to find answers was the idea that what was going with us was all in our heads.  Once we finally realized that not to be true, we were relieved just because we finally knew that we weren’t insane.  (The realization of the diagnosis doesn’t hit you right away.) So trust yourself and do not let others deter you from finding answers.
Rule Number 2: Learn who you can confide in and who not to confide in.  If you don’t look sick, accept that loved ones won’t believe that you are sick.   Most chronic illnesses develop slowly and symptoms of more than one condition will overlap because of that, a diagnosis takes time.  Your family and friends will be as confused as you are.  Dr. House may be able to diagnose a patient in an hour’s time but that is not true in the real world.  An accurate diagnosis can take months and sometimes years.  There are going to be people who will want to listen and understand your struggles and there will be others that won’t and probably never will.  Forget about the ones that you can’t confide in and let go.   This goes back to trusting yourself.
Rule Number 3: it is not all in your head.  If anyone, a doctor, a friend or a family member tells that “it is all in your head,” resist the urge to strangle them.  Resist the urge to spit in the face of the next person who tells you to take a vitamin, change your diet, or lose weight and you will be cured.  These people are ignorant and they probably will never understand so let what they have to say go, and don’t allow the perceptions of others make you doubt yourself because this will lead you down the road to depression. 
Rule Number 4: Accept that your moods will change. The way we feel and the way we perceive ourselves will depend on a variety of factors.  Add chronic illness to the mix and life suddenly becomes harder. Chronic illness brings with it a variety of emotions and changes in mood mostly due to the situation at hand.  The diagnosis and daily living with chronic illness brings feelings of loss and grief.  Changes in appearance, mobility and independence are additional complications.  Depression can be a symptom of the illness itself.  Pain and Fatigue and medication side effects also play a role a person’s lowered mood.  Last, social pressure forces a patient to want to appear to feel ok, and it is even harder without a diagnosis.   It is not unusual for your moods to change on a daily basis or even several times a day. It is okay to feel sorry for yourself and it is okay to cry, but don’t let these feelings consume you.  If that happens, don’t be afraid to seek professional help.
Rule Number 5: Find the Right Doctor.  A good doctor-patient relationship is a first step in successfully treating your condition.  It should be second to the relationship you have with your parents or spouse.  It is important to be honest with your doctor and trust that he or she is there to help you.  If you not feel that you are able to have that relationship with your doctor, find a doctor that you can have that relationship with.  On an average, most patients go to three or four different doctors before they find one that they are able to work with, can be open and honest with, and whom they feel they can trust to listen and understand their concerns.
Rule Number 6: Ask for and Accept help. If you isolate yourself, you are going to get depressed.  The irony is that people will surprise you and your true friends will step and support you, and there will be people, especially those you thought you could count on, who will walk away.  Accept that, move on, and know that you are better off.  Remember the law of the garage truck. It can work for any situation, including chronic illness, “Many people are like garbage trucks. They run around full of garbage, full of frustration, full of anger, and full of disappointment. As their garbage piles up, they look for a place to dump it. And if you let them, they’ll dump it on you. So when someone wants to dump on you, don’t take it personally. Just smile, wave, wish them well, and move on. Believe me. You’ll be happier.” David J. Pollay
If someone asks of they can help you, let them. Accepting help is a gift to the person offering it. Trust that someday you will be on the giving end. 
Rule Number 7: Take care of your own health as you would your child’s health.  Get plenty of sleep and exercise.  Eat healthy and rest if you feel tired.  Learn everything that you can about your condition and advocate for yourself.  These are things that no one else will do for you.  Learn to set limits and learn to say no if your body is rebelling.
Rule Number 8: Measure your standards and continue to have dreams.  Self-esteem comes from the very standards you set for yourself.   Your standards have to change from the minute you are diagnosed or else you will be destined for failure.  While setting new standards can be hard, it is a must to be successful with chronic illness.   I had different standards for myself prior to my diagnosis.  I took on a lot including my son’s activities and helping out various family and friends.  I used to have dinner parties and I constantly had family and friends over.   Then, one day I did not have the energy to take on all those things and I realized that something had to change.  Now, my kids and I spend more time at home doing together stuff, I don’t have visitors as often as I used to, and I don’t jump every opportunity to help a friend move or paint their home.  I have changed and so have my standards.
Prior to my diagnosis, I had different goals and while I still have goals, they weren’t the same ones I had three years ago.  Three years ago, I was planning on taking my LSATs and starting law school as soon as the results were in.  I found out I was pregnant with my now two year old so I decided I would take my LSATs when the baby was six months old.  After my diagnosis, I realized that I could not work, spend time with my kids, attend law school and be sick.  So, my plans changed.  I decided to finish up my master’s degree in legal studies online at a slower pace, do advocacy work, continue in my current position rather than take on a more challenging one, and to put law school off until my kids are older.  The belief is that being chronically ill means that your plans have to change, but that is not true.  The only thing that has to change is the timing and the path. 
A Final Thought
Living with chronic illness does not mean that our lives are over.  If anything, it is about looking for a better quality life. We need to be well informed about our conditions in order to live successfully with chronic illness.  While life is unpredictable, there is always a balance that we can find and the challenges are only mere obstacles that with time, we can overcome. 
What rules do you have for living with chronic illness?               

3 thoughts on “My Eight Rules to Living with Chronic Illness

  1. I personally like rules number 2, 3 and 6. When faced with a chronic illness such as RA or Fibro, people (rightly) focus on treatments, maintenance and proper care of themselves.What is usually left out of the little "What you should know" books is the part where people do not believe you, people walk away because it is "too difficult" for them to deal with, and even doctors who say they find nothing wrong so it must be all in our heads.The only thing that I would add, is that a person with chronic illness needs to become a bit more selfish. No one else knows the amount of pain you are in, how limited movements can be or how depressing it is to deal with it daily.This is truly the one time in life that a person needs to put themselves and their well being first. If they don't, they will have trouble being a good parent, friend,spouse or employee.

  2. Lana, I really loved this post. It spoke to me as I'm learning to navigate young adulthood and this ever-changing illness. You really put it so well. Number 8 was especially powerful to me. xoxo

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