Chronic illness – the second you hear this term, you become confused and suddenly find yourself in a vacuum. What does it mean? Life takes a different turn in the sense that while you may feel a sense of relief knowing what is wrong, you have no idea how to manage it.
Even the Internet, which is a great source for information, is incapable of easing most of your anxieties and fears because it is either clinical in its approach to chronic illness or assumes you know the basics. Thus, it is not uncommon for new patients or relatives of new patients suffering from chronic illness to find themselves in panic mode, feeling helpless and frustrated.
Even though you know others who have a chronic condition, it’s a whole different story when you become the person diagnosed with a chronic condition. The fact is that as of 2012, there were over 117 million Americans personally dealing with a chronic illness. The doctor’s words about your condition can change your life completely. You not only have to think about treatment; there are other pressing issues going through your mind like family, work, finances, and the future.
Here is a simple guide to help you become more familiar with chronic illness in the hopes that it will be able to calm you down to a point where you can take action to fight, live, work, and find love in spite of and because of your condition.
Your Mind is not the same as Your Body
For most people with chronic illness, the condition is more physical than mental, although you may experience depression and anxiety as a result of the condition. However, you can take control of your life by separating the two. In short, you can be happy and find inner peace if you understand that “you are not your body.” Your body may be fragile but you don’t have to be. You should listen to it but you don’t have to be at war with it. It’s like eating when your stomach grumbles (which is good), but not allowing the pain to turn into anger.
However, according to psychiatrist Dr. Britt Peterson, studies have shown that if you have good mental health, the management of your physical health will improve. You will be more positive about following the treatment protocol, you will not drown in depression or despair, and you will find reasons to keep living with your condition.
The key to finding that balance is taking everything in its right perspective. You have a condition. It will keep coming back in episodes or stages or become the new status quo. Allow your mind to accept that even if your heart is unwilling to at the time. Learn more about the condition and listen to others. They too – especially those who love you – will need to vocalize their fears and many will resort to trying to find answers. It’s a journey you all will have to take. You set the pace. You decide when enough information is sufficient for the day. Mentally, you are in control – and that’s where you get your balance.
Here’s another critical tip: when you can separate the mental from the physical, you will find purpose in life. You will socialize and not want to cling to the past or stay at home pretending nothing has changed. You will also start to search for a higher purpose. Go for it because life is all too important to be nonchalant.
As the founder of Spanx, Sara Blakely once said, “Don’t be intimidated by what you don’t know. That can be your greatest strength and ensure that you do things differently from everyone else.” Blakely heads a charitable foundation that helps empower women from all walks of life, including those with heart conditions and other issues.
If Your Child is diagnosed with Chronic Illness
This is probably one of the most heartbreaking experiences of a parent – to find out that her child will have a medical condition that no pill or formula can cure. The reaction of parents are unpredictable. Some fight back and demand to seek a second, third, or fourth opinion, never able to accept the truth. Others will pretend it is a temporary set-back and keep life as is. Still others will either completely break down or become true soldiers for their child. The fact that you are looking for answers proves that you are ready to do everything and anything to make life for your child as comfortable as possible.
You are not alone. Up to 27% of all children in the United States have a chronic health condition. One in ten children has asthma, one in 13 has at least one allergy, one in six has developmental problems, and over 15,000 were diagnosed with cancer in 2014 alone! In total, there are an estimated 20 million children suffering from a chronic condition. It doesn’t help to know that 33% of chronic conditions suffered by children are caused by environmental exposures (World Health Organization) or that chronic illness among children doubled in cases from 1994 to 2006 (American Medical Association Journal, 2010). Just like with adults finding out they have a condition, parents feel the same when talking about their child, sometimes bordering on physical pain for the parents.
“Why? Why my child?” This is the cry of a parent whose child has been diagnosed with a chronic illness. Sadly, there is no instant or even long-term cure, and that is one of the most difficult discussions you can have with your child.
Parents will seek answers and relief for their child suffering from an illness or disability. They will constantly ask if they are doing enough – and this is tough because even if you have all the money in the world, some conditions have no cure. Dealing with chronic illness in a child is not all about physical pain and suffering; you can help your child by taking care of your child’s mental health and positive experiences. There are thousands of examples of parents who find time to spend quality experiences with their ill child.
As Erica Cahill, an Illinois resident and mother going through life with a child with a chronic condition, once said, “There are very few worse things in life than being told your child has a life-threatening, chronic illness. It felt like in the blink of an eye our family’s goals, dreams and priorities were forced to take different turns.” Erica had to quit her job when her daughter was diagnosed at age five with an inflammatory disease in the brain. From experience, Erica talks about how you never realize how strong you are “until being strong is the only choice you have.”
There are at least ten areas that you need to focus on:
- Your child’s health and comfort
- Expanding your knowledge
- Your education and health
- Finding a solid support group
- Creating an emergency plan and adapting
- Learning to communicate with your child and the other members of the immediate family
- Management of home
- Finding time for relaxation and enjoyment
- Managing finances
It may seem like a lot to handle but you don’t have to worry about all of it right away. In fact, mix and reprioritize these ten items as you like and add more as you go along. This is just to give you a starting point so you can create a plan that works for you, your child and your family.
Eventually you should also learn to take care of yourself so you don’t get sick or feel that your life is on hold. There are many ways to experience personal growth while caring for your child. You just need to start by setting limits. No one can be a super-parent all the time. Once you feel you are being pulled in all directions, STOP. Take a breather or you will suffer from “parental distress,” which, according to the American Psychological Association, can make your sick child depressed and stressed. You don’t need to have the answers all the time. Just learn to say, “Let’s find out.” Or reassure your child and the rest of the family with prayerful guidance and a quiet voice. You’d be amazed at how speaking quietly has the power to relax the mind and body.
If Your Spouse or Partner is diagnosed with Chronic Illness
This is a difficult situation at best because it could mean going from a double-income household to a single income or a decreased income, plus higher expenses. But it’s just money! Money should be the least of your worries if you have faith, so focus your energies on strengthening your relationship so you can hurdle anything together.
Finally, the best advice for a family under stress is to communicate with each other honestly but kindly. Be ready and willing to sit down and just listen. One of the difficulties of a person just diagnosed with a chronic condition is depression. Talking will help, provided you gently set boundaries, because there are some who would like nothing more than to wallow in misery. It would be wrong to allow it to get this far.
Here are some valuable pieces of advice:
- Let your spouse or partner know he can talk to you whenever he feels pain, discomfort or depression – even if it’s in the middle of the night and you’re asleep.
- Go with him to his doctor’s appointment so you will understand a little of what he is going through and will be more patient.
- Ask questions and learn more about the condition.
- If your husband wants your opinion on something about his condition, read up and talk to him or bring him to someone who can give him answers.
- Adapt the new lifestyle with open arms. Change your diet a bit if you can. Embrace the lifestyle changes with a positive attitude. The tendency for the one with the chronic condition is to despair that “life has changed because of me.”
- Not everyone will know or understand what is happening, so whenever needed, stand up for your spouse and defend him or his actions.
- Give him space. Do not hover all the time. He will need time to rest to feel better.
- Give him reason to be happy and want to live. If he can’t work, find him something to do when he has the energy like online work using your home computer, a new hobby or an upcoming event.
Nothing is impossible to handle if you work together and support each other. And when someone needs a time out – give it gracefully. Agree that you both should have time away from each other because it is a difficult situation and arguments or a resentful attitude are not healthy at all.
Go ahead and work hard but learn to keep work from burying you from the situation. Go ahead and have a social life but keep the boundaries firm. This means avoid putting yourself in dangerous situations like getting drunk or staying out all night. Go ahead and leave the house chores for another day, but do make it a point to do them at least once or twice a week. Learn to streamline home operations so you can get more accomplished under less time. The Internet is stockpiled with tips on how to clean, cook and manage a house like a pro, but in less time than it might normally take.
Finally, it may seem bleak but there is a future ahead worth looking forward to. You will eventually enjoy happier times – all the more precious because someone in the family has a tender hold on a normal life.