LIVING WITH A HIDDEN & CHRONIC ILLNESS.To help your family/friends/carers to understand...
What is a chronic condition?
A chronic condition is a disease, disorder, birth defect or injury that a person has to cope with on a continuous basis. Chronic means the condition lasts a year or longer, limits activity and may require ongoing care.
Some sufferers have mild symptoms and with a little adjustment in their diets or schedules, they can lead a pretty 'normal' life. Many have to make bigger changes, sacrificing some activities or their work situations in order to contend with their conditions. Sadly, others become so ill they are unable to work at all and struggle just to meet life's daily needs.
Often an illness goes undiagnosed for several years, leaving thousands of people frustrated, depressed and without answers to why their bodies will not cooperate with their desires. When they do get a diagnosis, many times it takes months or even years to regulate medications. Even so, they are often having to adjust their prescriptions and vie with side effects on an ongoing basis. Unfortunately, some do not get much relief or any, although they have tried dozens of therapies and prescriptions and have undergone treatments and procedures.
But they 'look' fine! How can they be ill?
Many chronic conditions such as: *Arthritis, Back Injury, Brain Injury, Crohn's Disease, ME/CFS/CFIDS, Cystic Fibrosis, Diabetes, Fibromyalgia, Heart Disorders, IBS, Lyme Disease, Lupus, Mental Illness, Multiple Sclerosis, RSD, Spinal Disorders and many, many more cannot be seen with the naked eye, but are nevertheless persistently keeping the person from enjoying life the way they once knew.
Unfortunately, their families and friends are not often supportive and understanding, because they do not see a broken bone or bleeding head to confirm the complaints. However, do not expect to see a disease that lives below the skin, because most illnesses are not obvious from the outside! Your friend or family member needs you to believe what they are saying is true, without judgment or question.
*This is only a very small sample of the hundreds of chronic illnesses which can be disabling; it is not intended to be a complete list of all debilitating disorders.
They have 'good' and 'bad' days, right?
Actually, not everyone with a chronic illness has the same symptoms or degree of symptoms; yet, there are basically three stages in any chronic illness:
1) THE EARLY STAGE: This person may notice occasional symptoms or lack of energy. They start experiencing setbacks from activities which previously never took a thought. If diagnosed in this stage, which is rare, many can get help from their doctors and proper nutrition to cure or prevent further progression of the disease. This person has mostly "good" days with occasional "bad" days.
2) THE MIDDLE STAGE (or the Relapsing/Remitting Stage): This person may have frequent bouts of symptoms and is forced to make limitations for themselves in order to avoid extreme fatigue and relapse of illness. They reluctantly begin discovering that the simple things they used to enjoy, now must be done with care or sacrificed completely. In this stage, some can lower the frequency of relapse and progression of the disease with help from their doctors and proper nutrition. This person has both "good" and "bad" days, depending on activity and stress.
3) THE LATE STAGE (or the Progressive Stage): This person's disease has progressed to the point where it does not remit. They live each and every day with symptoms that feel much like having the stomach flu, complete with extreme to unimaginable fatigue, muscle aches, weakness, nausea, cognitive difficulties, dizziness and/or pain.
When they push themselves to do what used to be easy, like dusting a piece of furniture, going to a relative's house or doing a load of laundry, they pay a high price, because their symptoms worsen to an unbearable level for days and even months. In many cases, people in this stage are not candidates and/or do not respond well to the treating drugs. This person does not have "good" days, only "bad" days and "horrific" days.
I still don't understand!
At least once in your life, you have probably experienced having to stay home from work or school, because you were too sick to go. Now, I am not talking about a day where you might have felt a little 'under the weather' so you decided to call in sick in order to catch up on your laundry or your errands!
No, I am referring to being so sick it took everything you had just to get up the energy to lift up the phone to call your boss. This is a day where you could barely sit up or talk, had a fever that made every muscle ache and your bones feel like they were being crushed. Then, when you tried to get up to go to the bathroom, your head would pound, your body felt like it weighed a ton and you became dizzy and nauseous.
Or, you may have been hurt in an accident and were forced to give up activities you loved for weeks or even months. So, you know how stressful, depressing and frustrating being unable to do what you want to do can be!
I have yet to meet someone who is really down with a cold, flu or injury tell me they are having the time of their lives and enjoying every minute of it! Just imagine feeling that way most or all of the time, week after week and year after year.
Yes, some chronic illness sufferers have a few 'good days' in between, but many do not have any at all! So, if you see them out and smiling, does that mean they are having a 'good day'? Not necessarily! Many times they cannot wait for a good day to get out, because they do not have them; thus, they make the sacrifice, sitting there in horrible agony and knowing they will pay dearly for it later!
Do not expect a loved one to always be content with being sick day in and day out! After all, most people become very frustrated and impatient after just a few hours of being sick. Then, if it lasts a few days, they become panicked and angry about missing work, school or other activities. Next, they become depressed and act like a week out of their busy lives is the end of the world! Yet, they often treat their loved ones as if losing months and years out of their lives is no big deal! So, why would you expect your loved one to be happy with losing years of their lives, when you cannot stand to even lose a few days?
It is true, you will never fully comprehend what it is like to be chronically ill, with all of the loss and pain it poses. You will never know what it is like to feel horrible every day and you will never have a grasp at what it is like to watch your lifetime dreams come crashing down forever. So, stop using the excuse that you do not have understanding and start focusing on whether or not you have compassion!
In all, your loved one just wants you see their courage in enduring a life of feeling sick, achy and exhausted all of the time; and, you have the capacity to know you would not want to feel this way every day yourself! You know how horrible it is to be sick and forced to put your life on hold for a while, so why don't you tell them how amazed you are at their strength and perseverance!
What if they "give in" to the illness?
When a person loses their job or is forced to give up their career due to illness, for some reason people often treat them like they are choosing to do so and they are often insensitive to the fact that the sufferer has lost all for which they have worked, planned and hoped for their future.
Most people do not "give in" to illness; in fact, it is ingrained in our nature to fight to survive as hard and as long as humanly possibly. If you believe that your loved one is giving in to the illness, because they have given up their usual activities, this is just your perception of how they are handling their limitations.
When a person first experiences the effects of a chronic illness, they have a fantastic attitude about conquering it; they feel strong and invincible to its grip. Even if the disease progresses, they will continue to fight for their right to live the way they planned their lives to be; and, they will stay persistent in the battle until their bodies force them to make limitations.
Creating limitations for oneself is one of the hardest things a person can do. It goes against everything we are and everything we ever hoped to be. No one wants to be sick and no one ever chooses to give up those things in life which bring such joy. Yet, these limitations are mandatory in managing a chronic illness; so, respect their new boundaries by acknowledging their losses and supporting their need to say 'No'.
It seems like I am always saying the wrong thing!
What can sometimes be even harder to bear than the illness itself, is feeling alone in the daily struggle and mourning of lifelong dreams. As pieces of oneself die off bit by bit, isolation consumes them when others refuse to affirm their pain. By repeatedly trying to "cheer them up" and make them see the "bright side" you are not validating their pain, but instead saying, "I don't want to hear the truth" or "your losses don't matter." On the other hand, if you acknowledge their losses, they will no longer be compelled to gain your belief by having to explain their situation over and over again.
Resist the temptation to make a visual diagnosis by saying, "gee, you look like you're feeling good today" or "hey, you must be doing well." They may look like they are feeling well, because there is joy in their face from seeing you; however, your comment will only make them realize they are alone in their battle, since you are evidently unaware of their insurmountable hurdles.
In other words, by rebutting their answers with, "But you LOOK good," your friend really hears, "But, I don't believe you, because you look fine to me." Instead try, "I am so glad to see you," or "you look nice today,"
Encourage your loved one by affirming your trust in them, loving them and showing them that they are still just as valuable to you even if they can no longer do the things they used to do; your willingness to acknowledge their losses will give them the strength and positive attitude they need to fight the illness, instead of wasting their energy fighting with you to believe. They are not seeking your pity or sympathy, they simply want your compassion; some will need your help, just listen, they will tell you how.
We, as chronic illness sufferers, do not want to give up; we want to laugh, smile, look our best and enjoy life; after all, it is our incredible courage, perseverance and persistence to fight for our lives which make our illnesses and injuries seem invisible to the naked eye.
