Living With Chronic Illness Or Disabling Condition

Living With Chronic Illness Or Disabling Condition

We often take our lives and abilities for granted without realizing that things can change quickly, and life as we once knew it may never be the same. I work with many people that struggle with the symptoms of chronic illnesses or disabling conditions. I wanted to share their struggles and what we can do to help.

What exactly is chronic illness or a disability?

webmd.com has a good explanation of what defines this condition: “A chronic illness is a condition that lasts for a very long time and usually cannot be cured completely, although some illnesses can be controlled or managed through lifestyle (diet and exercise) and certain medications”. cdc.gov explains that “A disability is any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions)”.

Chronic conditions and/or disabling conditions can limit our daily functioning, or in other words, it can handicap certain parts of our lives. We all hope to stay healthy and fully functional as long as we live. But in reality most people will acquire some illnesses, disabling conditions, or chronic disorders, especially as we get older. However, our mindset usually is that this happens to other people, but not us. Well, this is until one day it does happen to you. Once you are facing a chronic or some form of disabling condition, your life changes completely, which isn’t exactly by choice. Nobody by choice wants to limit their abilities and life-style. And it’s almost certainly not just you (the person with the disabling condition) who is affected, this will spill over to affect your family, friends, and possible even bleed into your school/work environment.  

It is difficult for a person without an illness to actually realize the struggles a person with a chronic or disabling condition is going through. An independent person, who has all their life done everything without asking for help, might all of a sudden require assistance in areas that they never needed help before (unable to drive a car, needing a wheelchair, grooming, bathing, dressing, eating, just to name a few.) Prior plans and goals might need to be revised too. A person who had an active lifestyle, who was very athletic, may no longer be able to participate in sports as they used too. It can also limit abilities to attend family functions or social events. A person that struggles with a lot of pain, but can’t find relief might dread every new day without knowing how much pain they may have to endure. Often people feel ashamed and guilty that they can’t be the same wife, husband, son, daughter, friend, hardworking employee, etc that they once were. People often feel useless, worthless, helpless, hopeless, and being a burden to others.

All of this can also lead to severe depression and anxiety that might be added on top of the already ongoing problems of adjusting to the new situation. Unfortunately, in the worst case scenarios this might lead towards a downward spiral of self-medicating, drug/alcohol abuse, divorce/separation, losing employment, self-harming behavior and sometimes even suicide. This is why it is so important to understand what a person with a disabling condition or chronic illness is going through. This is especially true for someone in the early stages of a newly acquired condition, as this person is thrown into a whole new world they know nothing about. But don’t misunderstand, they don’t want you to feel sorry for them, they don’t want your pity. But they do need your support even if they initially refuse any help and decline, as they need to feel wanted and needed. They need a sense they are still worthy and valuable members in our society, within their families, to their friends, and in their work place.

5 Stages of Grief

In order to fully adapt and able to life live to the fullest again, it will take some time and effort in order to move forward. Kübler-Ross’s theory of the 5 stages of grief is often associated with death when we lose a loved one. However, this theory can be well applied when people go through traumatic or life changing events. Acquiring a chronic condition or disabling illness fits the bill. It is important to note that not everybody goes through this stages in a linear fashion, and there are often overlaps and sometimes setbacks, but in general once a person has worked through all stages, they have managed to adjust to a new way of living.

Pre-Stage: Shock

At this stage we aren’t expecting and/or understanding what is happening. Often this leads to a complete mental shutdown, almost as we want to protect our self from reality and the perplexing emotions that come along with it.

First Stage: Denial

At this stage we aren’t willing to accept the situation and truth just yet. This is a very emotional stage which may feel like being on a roller-coaster. Feelings of confusion, frustration, irritation may come to light. During this step most people don’t quite act their usual self.

Second Stage: Anger

In this stage we may have realized the facts, but we still aren’t ready to accept the situation as it is.  We aren’t ready to move forward. This stage manifests a lot of angry feelings of “this is not fair”, “I don’t deserve this”, “why me?”, etc. Some people may leash out at others and start pointing fingers in order to put the blame on someone, or even blame themselves. The purpose of life in general is often questioned during this stage, and the affected person might struggle with their faith or spiritual beliefs. This is for many people a very difficult stage to overcome.

Third Stage: Bargaining

This stage often results people trying to bargain with God or a higher power. At times people think if they make positive changes in their lives maybe the situation can be resolved. The thought process might be clouded with an overly idealistic but not very realistic view how the problem could be solved.

Fourth Stage: Depression

In this stage people most certainly realized the reality, and that things will never be like how they used to be. The thought process is stuck on what is lost and can never be the same. There is a negative perception on how life will have to go on, with a focus on what is lost, and the limitations that are forced upon one. Plans and goals as they were might need to be revised to adjust to the current situation. This is most often a long-lasting stage that is difficult to work through.

Fifth Stage: Acceptance

The last stage is coming to terms with the situation and accepting the chronic condition or disabling illness. Some people may get stuck with not being able to accept their life changes, and therefore might never be able to move forward with a postive mindset. This could lead to a person to become bitter and resentful. However, ideally people can accept that life in fact will change, which means they are ready to adjust to their new situation. This allows people to live in the here-and-now, as well as building towards a bright future and setting new goals. The difference of a person who has well-adjusted to a chronic condition is that they have the ability to focus on their abilities versus their limitations.

How can we help?

Societal views make it difficult for people with chronic conditions and/or disabilities to open up about their challenges. Let’s break the stigma about chronic illnesses and disabilities! We need to welcome people with challenges into our lives and make them feel welcome, as one day it might be us in their position. All people in our society are valuable and need to be treated that way. We need to foster this type of attitude to break existing barriers.

I provide counseling services for people who are going through the emotional struggles as mentioned above. If you feel that you might need help, or know someone who needs professional help, please reach out to me.  Therapy can often help people to balance their new lives better and get a positive outlook on life. If you need some extra support,life transitions counseling can help you, reach out to me when you are ready.