“I’m Sorry” On Repeat: Apologizing for our Chronic Illness and Pain

“I’m Sorry” On Repeat: Apologizing for our Chronic Illness and Pain.

Gosh I can totally relate to this!


Exercise and Chronic Diseases


Recently, I have decided to try and lose some weight and get in shape. It has been my goal for a few years, but since my doctor told me that losing weight and getting in shape could help control my Essential Thrombocythemia (a rare blood cancer), I have hit the ground running. Not literally, because lets be honest, I am only in shape if you think round is a shape and I don’t run unless someone is chasing me. I have always struggled with my weight, and although I was very active in grade school through high school, life got busy and I became less active over time.

In high school I was involved with the Tennis Team and I went bowling. In grade school I did tennis and cheerleading. All of these physical activities allowed me to maintain my weight and stay relatively healthy. Unfortunately, I have also had severe asthma since birth. I have struggled to breathe often, and I was in an out of hospitals on almost a monthly basis for the first six years of my life. I used to wake up in the middle of the night when my lips were turning blue from lack of oxygen. Thankfully, with the help of the most wonderful allergist/doctor I have ever met, I was able to start being active in the middle of grade school. My asthma was mostly under control through medication and because I built up my lung strength through these sports and activities.

Sadly, I got mononucleosis mid-way through my senior year of high school and was forced to stop playing tennis and bowling. By the time I got well again, it was time to move away for college. I didn’t join any teams or sports, even though I should have, because I was miserable at the school I was at and only wanted to move home. At the end of the first year of college, I did transfer home, and because I commuted to school, I did not join sports. After that, the excuses as to why I didn’t get active kept piling up and life moved on.

Now, I have been relatively inactive for about 7 years, with the exception of riding my bike occasionally and swimming in the summer. My lungs aren’t as strong as they used to be, and I have virtually no muscle. So what is a girl to do when she wants to exercise and get in shape, but has an asthma attack every time she power walks? I hit the internet to do some research. One of the best websites I found was from the Mayo Clinic (http://www.mayoclinic.org/healthy-living/fitness/in-depth/exercise-and-chronic-disease/art-20046049). The website encouraged me to talk to my doctors about what activities would be beneficial to my health and which ones would be detrimental. So off to the doctor’s I went to inquire about exercise and ideas on how to supplement that with nutrition.

Now, since my diagnosis of cancer, my oncologist has been wonderful. He really knows his stuff and doesn’t wait around for things to get worse. He is super proactive and I couldn’t ask for a better doctor. So when I approached him about weight loss in relation to my cancer, he gave me some really good ideas and information which didn’t apply just to my cancer, but also took into account my asthma and migraines (a side effect of the cancer). His suggestion was this:

  • Start slow by walking, doing some planks, leg lifts, crunches and sit ups at home. Do this for at least two weeks before you start working out at a gym.
  • Drink lots of water; at least 64 ounces of water five days a week
  • Try juicing and eating more naturally, meaning no fast food and I have to cook for myself.
  • Once you reach the gym work out level, walk on a treadmill before you start using weight machines. Make sure you walk at a brisk pace for at least 15 minutes, but do not run yet, as you will get an asthma attack.
  • Try yoga or pilates for endurance and strength, as well as flexibility. This can help build your muscles enough that it relieves some lower back pain (also a side effect of cancer)
  • Use your inhaler about 15-20 minutes beforeyou start your work out.
  • Choose realistic goals; while your ultimate end goal may be to lose 50 pounds, focus on a smaller short term goal and celebrate once you reach it. Remember that this is a marathon, not a sprint. You don’t want to lose weight to fast or in an unhealthy manner.
  • Try eliminating unnatural sugars, preservatives and processed foods from your diet. Do not try and do this all at once, as you can stress yourself out. Pick one thing to get rid of and start there. Once you have achieved that, try adding something else to get rid of.


My doctor also suggested that I look into the low impact exercises to reduce fatigue and to focus on the health benefits of regular exercise to keep me motivated. Cardiosmart.org gave me some great facts about the benefits of regular exercise:

  • It reduces cholesterol.
  • It lowers your blood pressure.
  • It makes your heart stronger and healthier so it can send more blood and oxygen all through your body.
  • It helps you control your weight.
  • It builds muscle strength so you can be more active.
  • It may reduce your need for medicines. This can lower the cost of caring for your disease.
  • It reduces stress and lifts your mood.
  • If you have diabetes, exercise can help you control your blood sugar.
  • People with chronic diseases often find that exercise reduces their symptoms.
  • It may also help them avoid depression, which is common in those with long-term diseases.


The website also gave me some great tips on how to work out safely:

  • Start out slowly. Over time, you will become able to do more.
  • Watch for signs that you are doing too much. You are pushing yourself too hard if you cannot talk while you are exercising. If you become short of breath, nauseated, or dizzy, or if you have chest pain, stop, sit down, and rest. If these symptoms do not go away, call your doctor.
  • If you feel “wiped out” the day after you exercise, exercise more slowly or for a shorter time until you can work up to a better pace.
  • If your medicines change, ask your doctor whether you should continue your exercise program. New medicines can affect how you feel when you exercise.
  • Adjust your exercise program if it is interrupted for more than a couple of days. Gradually increase to your regular activity level.
  • Talk to your doctor or a certified fitness professional about your progress. He or she may be able to help if you have problems.
  • Do not exercise outdoors when it is very cold, very hot, or very humid. When the weather is bad, exercise indoors or walk at a mall.
  • Learn about the risks of any new exercise you start. Use proper form. Take lessons if you need to.
  • Avoid holding your breath when doing exercises such as push-ups and sit-ups. Also avoid heavy lifting.
  • Do not take hot or cold showers or sauna baths right after you exercise. Very hot or very cold temperatures can be dangerous.
  • Do not exercise during times when your disease is not under control unless your doctor has told you it is okay.

A research paper I read gave some stunning facts about chronic diseases such as (http://jap.physiology.org/content/98/1/3#sec-20):

  • Cardiovascular diseases [i.e., coronary artery disease (CAD), hypertension, stroke, and heart failure], Type 2 diabetes, metabolic syndrome, and cancer are the leading killers in Westernized society and are increasing dramatically in developing nations(Diet, nutrition, and the prevention of chronic diseases. World Health Organ Tech Rep Ser 916: i–viii,1–149, 2003.)
  • Recent data from the Centers for Disease Control document that cardiovascular diseases, various forms of cancer, and diabetes combine to make up 70% of all deaths in the United States(Arias EAnderson RN, Kung HC, Murphy SL, and Kochanek KD. Deaths: final data for 2001. Natl Vital Stat Rep 52: 1–115, 2003.)
  • Recent data estimate that physical inactivity and poor diet caused 400,000 deaths in 2000, ranking second only to tobacco, and that it is likely that inactivity and diet will soon rank as the leading cause of death in the United States(Mokdad AHMarks JS, Stroup DF, and Gerberding JL. Actual causes of death in the United States, 2000. JAMA 291: 1238–1245, 2004.)
  • It has been estimated that 50% of all deaths in the United States are due to preventable causes(McGinnis JM and Foege WH. Actual causes of death in the United States. JAMA 270: 2207–2212,1993.)
  • Consumption of red meat is associated with cancers of the colon, breast, and prostate, as charbroiling and frying meats at high temperatures forms heterocyclic amines, which are potent carcinogens(Strickland PTQian Z, Friesen MD, Rothman N, and Sinha R. Metabolites of 2-amino-1-methyl-6-phenylimidazo(4,5-b)pyridine (PhIP) in human urine after consumption of charbroiled or fried beef. Mutat Res506–507: 163–173, 2002.

So, with all of that information, I am bound and determined to get in shape. I will help myself to deal with my cancer, my asthma and my migraines, by focusing on being healthy (NOT SKINNY). Exercise and a proper diet will help me feel better physically, mentally and emotionally. I do not want to be obese. I do not want to die from my chronic cancer. I want to live, and I am determined to do it. Anyone can do it, and if anyone needs support or motivation, I am only an email or comment away 🙂

Invisible Illnesses – Incurable Diseases

faking being well

Those with incurable diseases with little to no outward appearing symptoms will completely understand this icon. When you feel horrible 85-99% of the time, but it doesn’t show externally, it can be exhausting. It feels like you wear a mask daily because no one understands. No one seems to know that you struggle to get through each and every day. You tend to lie a lot to those around you, because no one wants to hear you complain all the time. The most common lie is “I’m Fine.” You have to be fine when you don’t look sick, or people will unnecessarily judge you. Common stigmas that people with invisible illnesses and incurable diseases face are ‘You don’t look sick.’ ‘You look fine to me.’ ‘I think (he/she) is faking it.’ ‘Just get over it, it’s all in your head.’ These are just examples of things we can hear and face every day.

But the fact of the matter is, it’s not all in our head. The struggle is real. Here are some staggering statistics and facts from the website http://www.invisibleillness.com, where they seek to spread awareness about invisible illnesses.

  • Nearly 1 in 2 Americans (133 million) has a chronic condition.
  • By 2020, about 157 million Americans will be afflicted by chronic illnesses, according to the U.S. Department of Health and Human Services.
  • That number is projected to increase by more than one percent per year by 2030, resulting in an estimated chronically ill population of 171 million. 
  • Sixty percent are between the ages of 18 and 64 
  • 90% of seniors have at least one chronic disease and 77% have two or more chronic diseases
  • In the United States 4 in 5 health care dollars (78%) are spent on behalf of people with chronic conditions. The Growing Burden of Chronic Disease in American, Public Health Reports, May June 2004 Volume 119 Gerard Anderson, PhD
  • Approximately 96% of people who live with an illness have an illness that is invisible. These people do no use a cane or any assistive device and may look perfectly healthy. (2002 US Census Bureau)

Invisible illnesses are often chronic conditions, but they range in intensity from moderate to severely terminal. Some examples of invisible illnesses are: chronic migraines, chronic backaches, lupus, fibromyalgia, diabetes, HIV/AIDS (which does not always show symptoms for the first few years), schizophrenia, heart disease, cancer, asthma, chronic obstructive pulmonary disease, and more. Many of these diseases are extremely prevalent in today’s society. There are many different types of cancer, as well as their individual research groups, and HIV/AIDS has had tons of exposure in the media. But these types of chronic conditions can come with external symptoms later on, some of which are created by medicinal side effects.

Look sickIt is easier for people to feel sympathy for those that truly may look sick or disabled, such as someone with the flu who is throwing up, or someone with a broken leg in a cast, or someone who has lost their hair due to chemotherapy and radiation. But for those of us who have invisible illnesses such as joint/muscle aches, migraines, blood disorders, diabetes and more, without the external symptoms, people lack the ability to understand. Sometimes they simply don’t want to understand. Illnesses with visible symptoms can garner national attention to raise awareness, but often illnesses without symptoms receive little to no attention. However, these illnesses are just as important. The Invisible Illness Week website tells us why:

  • The divorce rate among the chronically ill is over 75 percent. National Health Interview Survey
  • Depression is 15-20% higher for the chronically ill than for the average person – Rifkin, A. “Depression in Physically Ill Patients,” Postgraduate Medicine (9-92) 147-154.
  • Various studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides; Mackenzie TB, Popkin MK: “Suicide in the medical patient.”. Intl J Psych in Med 17:3-22, 1987
  • and more than 50% of these suicidal patients were under 35 years of age. Michalon M: La psychiatrie de consultation-liaison: une etude prospective en milieu hospitalier general. Can J Psychiatry (In French) 38:168-174,1993
  • Chronic diseases—heart disease, cancer, chronic obstructive pulmonary diseases and stroke—are the leading causes of death in the United States. CDC, National Center for Chronic Disease Prevention and Health Promotion. (2010)
  • Seven of every 10 deaths in the U.S. are caused by chronic conditions; heart disease is the leading cause of death among both men and women, followed by cancer and chronic obstructive pulmonary diseases—diabetes is seventh. CDC, National Center for Chronic Disease Prevention and Health Promotion. (2010)
  • Chronic, disabling conditions cause major limitations in activity for more than one of every 10 Americans, or 25 million people. CDC, National Center for Chronic Disease Prevention and Health Promotion. (2010)

Sadly, chronic pain and illnesses can’t simply be fixed by taking a pill {Professor Stephen Gibson, President of the Australian pain society). And because pain often shows no physical signs, people including health professionals will often not believe sufferers are in pain which is one of the reasons they are at such high risk of depression, anxiety, social isolation and relationship breakdown (Coralie Wales, President of Chronic Pain Australia). That means that everyone is fighting some sort of battle we know nothing about. And yet society still doesn’t seem to understand that judgement and hatred should not be shared based on something you know nothing about. Don’t yell at the person parking in the handicap space who doesn’t have a wheelchair or cane. You have no idea what is going on in their body. Don’t ask them to just get over it. Don’t tell them it is all in their head, or that they should be ashamed of themselves.

Everyone reacts to illnesses differently, and although some may share similar symptoms, no one person is the same, so why should their reactions to illnesses and medications be the same? We need to spread the word about the ‘invisible ills’ and speak loudly about tolerance for others. By educating ourselves and those around us, hopefully we can inspire more research, and more tolerance for others. Please don’t assume that someone is fine, just because they say they are or because they look ‘normal’. It very well may be a mask that they are wearing, even though they may feel like just breaking down.

Often, I personally struggle with the mask I wear. I go to work and out with friends and my boyfriend, and I get exhausted easily and lack strength in my muscles. It makes it hard to do certain things. But I always smile and say that I am fine. Even when I am not. It’s easier to lie than it is to explain that I physically hurt almost 100% of the time, or that I would prefer to sleep for about 18 hours straight every day just so I can feel like I have a little bit of energy when I am awake. Lying is easier than saying I just want to cry myself to sleep some nights because I feel completely alone, even though others have the same disease that I have. Every battle is different, and you can’t win them all. Sometimes I get home after work and burst into tears, even when I have had a ‘good’ day. Well, a good day for me that is. And the tears come because I am unused to having too many ‘good days’. Some Saturdays I sleep almost all day after going to bed the night before. I waste my weekend, but at least I feel rested for the first time all week. Other days I lay in bed or sit at my desk, biting my tongue because I hurt so bad and the medicines don’t help unless they knock me out. My temper has gotten shorter, and some days I am angry at the universe. And yet I get up every day and attack the day again, even knowing that I have to put on my mask. I don’t give up, because giving up isn’t an option for me. I want to do more than just exist. I want to be more than my illness. I want to have a social life. I want to live.

So, although it takes courage, and I try again, each and every day to have a good day. And I am not dying, so they are all good days. The pain, stress, irritations, and complications that I have on bad days remind me that I am still breathing. And if I am still breathing, I am not failing. I can do this. We can do this. Don’t become a victim. Don’t victimize others. Make your life worth living. It will be hard, but I know it will be worth it.