Living with Chronic Illness: Part Two

Chapter Five: How our chronic illness affects others

Struggling to live with chronic illness has many different challenges.  We have to come up with ways to do our usual daily activities,  we try to stay in contact with friends and loved ones and, if you're like me, you have to add in a lot of time for those doctor appointments, X-rays, blood work, etc..  It's very easy for me to become caught up in what's going on in "my" world and lose focus on what's going on with other people that I know.  Good friends are usually understanding when you don't keep in touch with them as often as you used to, and some family members may realize that you just can't live your life the way you once did. However,  some friends and loved ones have a difficult time adjusting to the new "you" and how your illness has changed things.  It's not that you, yourself, has changed (ok...so we can be cranky and short-tempered when we feel bad or are in pain, or are having difficulties with the side effects of our medications), it's that your lifestyle and how you now have to live that has changed.  

At first, I didn't totally grasp how my illness was affecting others.  When I had my first back surgery, everyone rallied around me, offering help. But as time went on, and new health issues arose and they saw this was the new me, the new "always sick" me, they went back to their own lives and I was left to deal with my health problems.  I have to admit that at first I felt hurt and then I struggled with feeling sorry for myself and wondering where everyone had gone.  I began to come to the realization that some of my friends and family just didn't feel comfortable being around me or didn't have the patience to deal with someone who has chronic illness and pain.  They wanted me to get better and when I didn't get better as soon as they thought I should, they began to withdraw.  I could tell they felt uncomfortable around me.  Our conversations, which used to be good ones, turned into more of a conversation you'd have with someone you just casually know.  The phone calls and visits were fewer and fewer.  They were withdrawing just when I needed their support.

The major person my illness and chronic pain has affected is my husband.  At first he was optimistic that "we can beat this thing", but as time went on and it became evident that this was a life changer, he really struggled.  He went through a period of time when he was angry at the doctors because he felt they weren't trying hard enough or doing enough.  Then he got mad at God because he couldn't understand why He was allowing this to happen to me.  It really affected his relationship with God for quite some time as he struggled with the "why's" of what all was happening.  Then, he'd get frustrated with me because I just couldn't do what I used to be able to do, like go to family functions because I couldn't ride in the car for very long.  Relationships with our friends started to drop off as he got tired of going to events by himself.  He told me he got tired of always having to explain to everyone why I wasn't there and then, in turn, explain what was going on with me.  So, in essence, he stopped going out very much and stayed more at home all because of my health issues and the baggage that goes along with it.

We lived like this for the first several years and I could feel that things were just not right.  He was depressed over the whole situation, our families struggled with us not showing up for  family events, and our friends just seemed to drop off the map, one by one.  One day he sat me down and told me flat out that he couldn't live like this anymore.  So, we talked it through and decided that even though I was pretty much home-bound, he needed to resume a social, more "normal" life.  At first he had a hard time going to events without me but I noticed that when he came home he was more upbeat and less depressed.  It was then that I realized that my health issues had become his problem, too, and that they were taking a toll on both of us.  While my husband is very, very supportive I couldn't expect him to stop living life just because my life has had to change. 

So, now he goes to family functions without me if I'm not up to going.  While it's not what either of us want, I realize it's what he needs.  He needs to feel like he's living somewhat of a normal life because the rest of the time is consumed by the needs of living with a spouse who has chronic illness/pain.  He meets our friends for dinner or goes to events that they are having, usually alone because I'm not up to going.  Some times I will go, but I have to prepare ahead of time so that it doesn't set me back.  And sometimes it does set me back and I feel worse afterwards.  But the time spent with family and friends has now become something more cherished and special because I know that the times I get to see them has to be balanced by taking care of myself.

Please ask yourself how your illness is affecting your loved ones and friends.  While it can be hard for us to understand and accept the way they respond to us, we have to understand that they have struggles with us not being who we used to be.  Some people simply don't know how to have a relationship with someone who is chronically ill or in pain.  They feel uncomfortable or unsure of how to interact with us or what to say.  And, let's be honest, we can get so caught up in our health issues that that's all we focus on...looking for the latest remedy, wondering what the latest medical findings are for our condition, or keeping track of our next doctor appointment.  We have to realize that we may have allowed our condition to become the major focus of our life to the point that we are not being who we used to be.  It definitely is a balancing act, dealing with our illness/pain issues and trying to live a "normal" life.

Chapter Six:  How to keep working when you're ill

Most of us need to work in order to pay our bills and support our families.  Many expenses pull at our purse strings, and often unexpected expenses arise at the worst time. If you're dealing with a chronic illness or pain, that can be an additional unexpected expense, which can range from something as simple as over the counter pain medication to some serious money if you have to have surgery, in-home nursing care, etc.  Many try to continue to work as long as they can.  Given the strain their finances are dealing with, it can be very difficult to work while also being chronically ill or in pain.

When pain, cognitive problems, mobility issues, or fatigue make it difficult for us to continue our former pace, we can face some rather difficult and serious choices.  The way we approach these choices will be a reflection of how well we accept our disease and how it's affecting our lives.

It can be very difficult for some to remain on the job.  We try to cover up our disabilities and difficulties out of fear of losing our job and the income that we get from it.  For some, it's also difficult because we often place our sense of self-esteem on our  job, especially if we're the sort of person who has a lot of their identity wrapped up in what we do as a profession.  For me, I hid my medical problems for a long time as I didn't want to give up my practice that I had worked so hard to start up.  I forced myself to go to work and at the beginning I was able to do it.  Over time, however, as I got sicker, it was harder for me to cover it up and my colleagues began to question me on how I was doing.  While I was trying to act like I was doing okay, they were realizing that I wasn't.

What I began to realize is that pretending to be well was taking a lot of energy out of me that I simply didn't have.  I would leave work and come home so exhausted that I'd go to bed until it was time to get up and go back to work.  I began to rely more and more on caffeine and fast food to get me through the day because I simply didn't have the energy when I got home to cook a decent meal for myself.  I'm sure that my poor eating habits didn't help my situation.

Mornings can be especially difficult for those of us who wake up feeling fatigued, like we haven't even slept, and are in pain or feeling bad.  Often, my thinking was clouded and I felt very lethargic because I simply was not getting a good night's sleep due to the tossing and turning all night long.  And then there were the periods of insomnia I would experience.  One Christmas I was actually hanging the outside Christmas lights at 3 a.m. because I couldn't sleep.  It was like I was too exhausted to sleep!

Taking care of ourselves on the job can be difficult.  We want to keep up with our peers and show that we can still do our job, while all the while we feel horrible.  Many days I arrived at the office exhausted and in tears, wondering how I'd get through the day.  I would often hide in the bathroom just to sit and try to relax and get some rest.  Taking care of ourselves at work can be difficult.  Sometimes the very nature of the job won't allow it.  Those that work on an assembly line can't very well just walk away and go rest for a while.  And if your boss is waiting for a report from you that you've been working on, you can't just say you were too tired to work on it, so you push yourself.  And you push yourself.  Day after day.  Until you get to the point where you just can't do it anymore and your body say's enough...I can't do this anymore.

I was so stubborn and determined not to let my illness and pain rule my life that it took me several years before I finally gave up work and went on disability.  It was the hardest thing I had to do as I had so much of my identity wrapped up in what I did.  And, I really enjoyed my job (let's face it, it's easier to walk away from a job you don't particularly like).  I had worked hard to get where I was, and to have to leave it was one of the hardest things I've ever had to do.  I had even began to cut back on the amount of hours I worked, hoping to retain employment, but towards the end the choice was made for me...I was just too sick to go to work anymore and I knew it.  I didn't like it, but I knew the time had come for me to accept my health issues and the impact they were having on my life.  So I left the work force and became a house-bound, chronically ill person.  It has been a real struggle for me as I didn't realize how much of my identity was wrapped in what I did.  It's not been easy, but I've come to gradually realize that my identity is in who I am, not in what I do.

For those of you who are still able to work or are trying to continue working, I'd like to share some  some government regulations that may help you.  I realize that everyone's situation is different so please consider that as you read this.  If you're already like me and have had to give up on working, then this may be information that you may not find very interesting.  However, if you're struggling trying to keep your job while being sick or in pain, this may be beneficial for you to read.

Title I of the  Americans with Disabilities Act (ADA), passed in 1990,  means that employers have to make "reasonable accommodations" to help us do our job and the law requires that our employers respond to our requests.  The ADA applies to employers with fifteen or more employers.  A "reasonable accommodation" is any modification or adjustment to one's job or work environment that enables you to perform the essential functions of your position for which you are qualified to do.

It may involve buying you a more comfortable chair, having your work area re-located closer to the restroom, buying you a voice-activated computer, allowing you to take breaks so you can get up and move around, restricting the amount of weight you have to lift, or even modifying your work schedule to accommodate your need to work fewer hours or different hours, if you have doctors' appointments or physical therapy.  

Accommodations cannot infringe on other employee's rights.  For example, if you cannot tolerate perfume you cannot demand your co-worker doesn't wear it, but you can wear a mask (or simply ask your colleague to not wear it so heavy or at work).  An employer cannot refuse to honor your request for accommodation unless the company can prove that doing so would create "undue hardship".  Depending upon the company's size and resources, installing an elevator for a person who cannot take the stairs might constitute an undue hardship.  If the cost of the accommodation is prohibitive, the ADA requires an employer to allow the individual to provide it or to help the company pay for it.

Also, an employer may not fire an otherwise qualified individual who requires reasonable accommodation to perform the "essential functions" of a job.  Anyone can write an ADA complaint, which is filed with the EEOC.  Individuals whose cases cannot be resolved by the EEOC may file a lawsuit in federal court, but most complaints never get that far.  This is due to the fact that most accommodations are relatively inexpensive and easy to provide.

The ADA also protects those with disabilities who are looking for work.  According to the law, employers are forbidden from denying a position to a qualified individual who needs reasonable accommodation to perform the job.  Also, firms are prohibited from seeking medical information from an applicant prior to making an offer.

I hope you find this helpful.  Please remember, if you have had to give up work as I did, you are more than what you do...you are special because of who you are, NOT because of what you do!!

Chapter Seven:  Can anything good come out of being ill?

As I sit here, not able to go out because out of the really hot weather (it makes me feel much worse than usual), I struggle to try to find something positive in the midst of it all.  I know others are going out to Fourth of July picnics and will be watching the fireworks, while I'm here, stuck in my house.   I could go out and join in the festivities, but I know from past experience that the result would be I'd just end up feeling bad while there, and it would make me feel even worse for the rest of the week, if not longer.  

So I have a choice to make.  Do I want to sit here and feel sorry for myself or do I want to try and find something positive in what I'm going through.  It's a hard decision to make, especially as I often feel like life passes me by.  It's a difficult question...can anything good come out of me being ill?  Ultimately, it's up to me to decide...

Just as an individual who has gone through cancer treatment has come to appreciate the quality of life he or she has left, those of us with a chronic disease can often find meaning in our own situation.  We discover hidden strengths, find a new sense of direction and often develop healthier habits as a way to make ourselves better.  I've discovered for myself that ill health has caused me to grow not only emotionally and spiritually, but it has also developed within me a greater desire to show compassion and help others who are struggling with things in their lives.

I know that living with chronic illness or pain can be a tremendous burden to bear, so please don't think I'm trying to downplay the severity of what you're going through.  As Patricia Fennel said "There isn't always a silver lining to chronic illness.  Sometimes, there's just suffering."  But she goes on to say that "such suffering can transform us if it helps us to accept who we are, warts and all."

Many I have talked to have reluctantly agreed that their illness or issues with pain have taught them some valuable lessons, although they readily admit it's not the way they would have liked to have learned those lessons.  They mention learning how to slow down their pace of life, learning to be more open to receiving help from others and realizing that they cannot live in isolation or be overly self reliant.   Some have found ways to share their experience, by running support groups or forums/blogs on the internet.  I realize that we'd all rather be healthy and happy, but we have to come to realize that we have to deal with what life has given us.  And, as I said earlier, the decision is up to us as how we deal with our illness.

For many of us with chronic illness, it can cause us to question our faith.  We question and ponder why God would allow this to happen to us.  Years of struggling with my illness and pain issues has caused me to meet God on a much more personal level.  I'd be lying if I said I didn't struggle with anger, frustration and resentment towards Him in the beginning.  But as time has passed, I've come to realize that everything that has happened in my life ultimately has had a higher purpose, even if I didn't understand it right away.  It has caused me to strengthen my walk with Him as He is ultimately my only source of support.  My husband, friends and doctors do what they can for me, but in the end it's God that is the one that can only truly comfort me.  Through the years I've developed perseverance, endurance, and compassion, all while growing stronger and closer to God.  I've learned to thank God for the blessings I do have in my life.  I'm not so sure that I'd be as aware of what blessings I have in my life had I not been brought to this point.  I often wonder how my life would have been different had I been healthy and live what I think would have been a more normal life.  Maybe I'd be more materialistic, more selfish, more career driven and less compassionate, less patient, and less appreciative of the simple things in life.  Maybe being ill has had it's benefits after all.

For some, it's a time of renewing their faith.  They may have grown up in church and then allowed the pressures of life to draw them away from their faith.  When faced with the challenge that chronic illness brings, returning to one's faith roots is often a result.  You're scared, not sure what to do or what your future will hold so you return to the faith of your youth.  And you find God waiting there to comfort you and offer you hope.

Sometimes the sense of loss we experience as a result of our disease causes us to look inward.  We are left alone with ourselves and are often forced to take the time to know who we are, which can be a scary thing.  When things go along smoothly in one's life, it's a lot easier to be happy, kind, and friendly.  But when we get ill, we find out what type of person we can  become.   We can become grouchy, irritable, unresponsive to others, complaining, angry, resentful, and overly needy.  It's not a pretty picture to find out what is really at the core of who we are but it does give us the opportunity to change.  

Being ill usually forces us to develop healthier habits.  Perhaps it's human nature to put off what we know is good for us in exchange for what is easy or more fun or tastes better.  Chronic illness often forces us to take a serious look at how we live, our eating habits, our stress levels, our exercise levels and the pace with which we live.  For some, becoming ill is a wake-up call.  We realize that we can no longer live recklessly and we need to take better care of ourselves if we want to do all we can to help our health.

So, now it's your turn to decide.  How will you let your chronic illness affect you?  Will you allow it to cause you to develop a "poor me" attitude or will you adjust to what has happened to you and try to find the good things that can come out of it?