When you are sick with an illness like the flu, you recognize that you will get well within a short period of time. If you are diagnosed with a Chronic Illness, on the other hand, the reality is quite different. A Chronic Illness will never go away and the symptoms can make coping very difficult.
Here is why coping with Chronic Illness is hard:
1. Symptoms are invisible to others
Because of this many people are not able to grasp the severity of the illness. Some may even doubt the sickness altogether. Living with an invisible illness makes you feel like you living in a bubble. This creates an life that is very isolating
2. Inability to make and keep a schedule
Often times, friends, family and employers are unforgiving when sickness keeps you from activities. This can cause strain on relationships and also cause job loss. Many people with Chronic Illness are no longer invited to events and this continues to add to the isolation created by illness.
3. Feeling like you have to act “ok” even if you are not
Let’s face it, people ask how you are out of habit or general politeness. It doesn’t mean that they really want to know the truth. I have made the mistake of answering the question with the truth and watched as people made a quick escape. So, most people with Chronic Illness will put on a happy face even though that also sends ridicule their way.
4. Side effects of medications may be severe
Medications can make you gain or lose weight, cause hair to fall out, decrease libido, cause nausea and the list goes on and on. On top of managing symptoms, it is also necessary to manage side effects. I have taken medications that had side effects that were worse than my original symptoms. In that case, managing side effects becomes a huge part of life.
5. Managing an illness may require major lifestyle changes
Most Chronic Illnesses are helped by special diets such as gluten free, nitrate free, sugar free diets, for example. Making these changes can be discouraging because so many other things in life are being taken away as well. Making huge changes in diet and activity while also dealing with the destruction Chronic Illness can bring many frustrations.
6. Having to give up activities you enjoy
Being sick is exhausting and as you body uses energy to battle the illness it becomes harder to do all of the things you enjoy. Because there are things that you must do, hobbies and social activities are often set aside.
7. Loved ones must become caregivers
Of course, spouses take care of each other when needed. When one has a Chronic Illness, the other becomes the caregiver. Because the illness is long term, it can put a strain on relationships unless you both work together to ensure both are doing ok.
8. Knowing a good day may not stay good
Symptoms seem to choose the most inconvenient times to show themselves. This means that even on good days we worry about how long until all heck breaks loose. Coping with Chronic Illness on good days can be just as difficult as bad days because of the fear about when symptoms may return.
9. Feeling guilty for a sickness you have no control over
Sometimes, Chronic Illnesses are not effectively brought under control with medications, diet or therapies. Although you are doing all that you can, your illness may not be managed that well. When this happens, as it is in my case, it is easy to let discouragement and frustration to lead to guilty feelings.
10. Being or feeling isolated from the outside world
It is hard to watch the world go by from the sidelines. Knowing the world around you is continuing to revolve while you are sick makes you realize all that you are missing. The isolation can easily lead to depression which is why Chronic Illness and Mental Health are so closely connected
11. Finding Doctors that are invested in your health is difficult
Often times, specialists in a field are not specialized enough to be effective in managing your care. Finding Doctors that know about the latest treatments and who is also willing to think out of the box is nearly impossible.
12. Dealing with stigmas is frustrating
Many illnesses, such as Chronic Migraine, ME/CFS and others, have negative stigmas. Migraines are not just bad headaches and ME/CFS is more than just being very tired, for example. These perceptions cause people to treat you like your illness isn’t serious enough to affect your life.
13. You are required to plan out every step of your day
Simple tasks, such as personal hygiene and getting dressed, uses an amazing amount of your energy. Sometimes, just getting ready to leave the house can exhaust you to the point that you cannot do the activity you were planning. The most simple things have to be planned so you can pace yourself.
Why this Matters
It is important for people that do not battle Chronic Illness to have an understanding of these things. Keeping these in mind will help you know what a person with Chronic Illness is going through in their day-to-day struggle.
It is also imperative for a person on a journey with Chronic Illness to be able to recognize why coping with their illness is difficult. Knowing these things can help ease the burden, even if only a little while.
What items would you add to the list?
- Chronic Illness Related Anxiety
- 5 Steps to Challenge your Mindset
- My Mental Health Story
- 5 Thoughts that Impact your Mental Health
- The Dangers of Comparing Yourself to Others