Atlanta HEAL members share their struggles and coping strategies
Coping With Chronic Illness - emotional/psychological guide & quotes by patients 
Ten resolutions for dealing with chronic illness 

Atlanta HEAL Members Share Struggles & Coping Strategies

Our May 15th meeting was a sharing session facilitated by HEAL member Ian Greenberg. Ian, who has a masters degree in psychology, started with a short presentation on coping with chronic illness. Ian said that even though we all have a lot of knowledge about our illness, we need to learn how to cope with the emotional roller coaster that comes with having a chronic illness. Ian cited several examples about situations that we need to learn to deal with:

• 1. How do you deal with those family members who think that it's all in your head and suggest that you get psychiatric help?
  2. What do you do with all of the anger you feel at a world whose lifestyle doesn't accommodate you?
  3. How do you cope with the guilt you feel because your family has sacrificed so much to accommodate you?
  4. How do you handle the isolation and loneliness that comes from an illness that keeps you housebound most of the time?
  5. How do you deal with the fears so that they don't end up running your life?
  6. How do you grieve for the loss of the life that you once had?
  7. How do you hang on to your job when you can't tolerate the workplace?
  8. What do you do when you get exposed and you're up all night yelling at God, because you can't believe this is happening to you?
  9. What do you do when your best friend doesn't "get it" and it's no longer safe to be around her?

In dealing with these situations, Ian said that it is important to express your feelings in ways that don't hurt those around you, and that the ultimate goal is to live the best life that you can, given your limitations.

Ian pointed out that there are 8 typical reactions to learning that you have a chronic illness. These are shock, denial, confusion, fear, avoidance, anger, grief and guilt. These reactions are quite normal, but it is important to deal with them so that you can move past them. He said that working through these reactions leads to acceptance which is the first stage in healing. Ian then initiated a sharing session where everyone had a chance to talk about the issues they have struggled with and then the coping strategies that have worked for them. HEAL members struggled with the following issues:

• 1. Living in denial. Not accepting that you have a disability.
  2. Self-esteem issues. A feeling of not being whole due to having a chronic illness.
  3. Living in the past (when you were well) or future (when you will be better), because the present is too difficult.
  4. Un-cooperative family members and not being able to see your loved ones because of this.
  5. Driven by fears of the future (getting worse) and fears of being exposed.
  6. No social activities e.g., parties, dating and events because it's just too difficult.
  7. Requesting accommodations.
  8. Too busy trying to survive to enjoy life.
  9. Getting hospitals and other health care providers to take your illness seriously.
  10. Frustration over not being able to give back or contribute to the community.

HEAL members found the following strategies to be helpful:

• 1. Faith/Religion/Spirituality.
  2. Developing support from family, friends and support networks such as HEAL.
  3. Activity - keeping busy in any way possible.
  4. Laughter. This illness is really hard but some of the things you have to do to avoid exposure are really comical.
  5. Keeping a positive attitude. People don't want to talk to you when you're down all the time.
  6. Knowledge. Getting educated about this illness and keeping up with the latest developments.
  7. Finding purpose by joining environmental groups, writing articles or other types of advocacy.
  8. Concentrating on what you can do rather than what you can't do.
  9. Monitoring what you say to the average person - communicate needs without telling your story.
  10. Reframing problems when talking with members so as to not be a burden.
  11. Taking one day at a time.
  12. Calling someone to get outside yourself and talking about things other than illness.
   

Coping With Chronic Illness

This information can help people and their families cope with chronic illness. It contains quotes from patients who face a variety of medical problems. These people overcame great challenges, which, at times, seemed insurmountable. Together with their families and caregivers, these patients learned to go on with their lives. You can, too. 

Part 1: Reactions to illness
Reactions to learning of one's chronic illness are varied, but they are always powerful. Emotions may range from shock to relief, and everything in between. Even when symptoms have been present for a long time, the realization can be upsetting. While shock may be the first reaction, denial is also common, as are anger and grief over the loss of health. Some people become unconcerned about what goes on around them. Still others may sleep, cry, or withdraw to themselves.  These reactions are normal.

Shock
“I used to go out dancing and have a great time with my friends. One night I came home and went to bed. The next morning I literally could not get out of bed. I had no idea what was wrong with me and the doctors could not find anything. Yet, every time I went out I would become very ill.  Months later, we discovered that I had this environmental illness. It was devastating. I just didn't know what was happening to my body as I seemed to be allergic to about everything.  It seemed to happen overnight. I kept thinking I'd wake up tomorrow and this would all be gone.  I was devastated. I went into shock. I grieved. I thought about all the things I couldn't do. After doing a lot of research, I knew what to expect and it really rocked me. I thought, 'If I can't be of use anymore, what's the point of living?’ ”

Denial
Refusing to accept your illness right away may give you a chance to regroup. You may need the time to gather enough strength to confront what you are facing. 
“I just didn't want to accept the fact that I wasn't going to get back to the way I was. I have a lot of pride, and I didn't want this illness to be a reality. I had never been on this side of a disability. I never thought it would be me. I blocked that.”

Confusion
You begin to explore the many facets or your condition.  There is a lot of conflicting information out there.  You read about a whole host of therapies, that seem to help some people, but make others worse.  There are a lot of alternate practitioners with a lot of theories which seem to make sense, but can they actually help you?”

Fear
“In the periods early on, I was anxious regarding the prognosis for someone with my condition.” 
“I am afraid that I will be like this for the rest of my life or I will start to get progressively worse until life becomes unbearable.” 
“Before I got educated about my condition, I used to fantasize about the worst possible outcomes.  These fantasies depressed me.”
“There are those odd times when I have to go somewhere and cannot avoid exposure.  I used to stay up all night worrying about it, which only made my reactions worse.”

Avoidance
Some avoid dealing with their illness. At times, this is a normal, healthy reaction.
“I don't think much about it until I try to live a normal life, get overly exposed and then I’m out for a few days.”

Anger
“I used to be angry. Why am I like this? Why can’t I live a normal life? Why can’t I participate in life’s essential activities? The whys went on and on.”
“I used to think, 'If there is a God then why am I like this?’ and ’Why do people have to suffer?’ I’ve actually gained through the suffering! I can’t say that it was an easy experience. I did a lot of crying, a lot of blaming, and spent a lot of time being angry at the world. I’ve learned that the hate I had in myself was not doing me any good. That’s when I made the choice to change, to see what I could gain from my illness.”

Grief
“I used to cry myself to sleep. As I have learned to share my feelings with others, sleep comes more easily.”

Guilt
“My family has had to sacrifice a great deal to accommodate me. They no longer have the life they used to. That’s tough for me.”

Dealing with the unknown
Some chronic illnesses take people through periods where they feel better mixed with periods of feeling really awful. Adjusting and readjusting to these changes may seem daunting. 
“In five and a half years of illness, I’ve struggled with the question of how to live a ‘normal’ life and plan for a future while the possibility of getting worse looms over me. I’ve decided it’s that sort of constant uncertainty that is the worst of it all. It’s not easy dealing with the unknown.” 
“For years I knew something was wrong...it came as a relief to give it a name. It wasn’t in my head! Any diagnosis is a relief because you know what you’ve got to fight. If people have proper diagnoses, they know which tiger to fight (as opposed to the whole jungle). Knowledge is power.”

Handling reactions from others
One of the most crippling things about chronic illness is the way some cultures shun the sick. In other cases, people’s own fears keep them from offering support. By standing up for yourself, regardless of these feelings, you can work with others towards better understanding. 
“Some people don’t want to help. Maybe they feel that my illness will rub off on them. They don’t want to recognize that disease happens, and it can happen to them and their friends.” 
“It is interesting what a wide range of reactions I get from people about environmental illness.  Some have no trouble believing that chemicals and environmental pollution are making people sick, yet others cannot comprehend that people can react to such a wide range of environmental pollutants.  I still have friends and family that think that it’s all in my head and that I need psychiatric help. I try to spend more time getting support from the believers than trying to convert the non-believers.”  

Part 2: How to cope
The way you cope with your illness may have a lot to do with how you dealt with crises in the past. As you handled them, you gained strength, and you may have benefited from the support of others. When dealing with chronic illness, you may find strengths you never thought you had. And while chronic illness may close the doors to some parts of your life, it may open others. Patients coped with chronic illness in many ways. Acceptance of the condition is essential, as well as finding ways to feel more in control. Building on old relationships and starting new ones are also important.

Acceptance
“For a long time it seemed to me that if I could just endure a little longer and be patient, I could resume my life. But it was one exposure after another. It seemed as if I was taking one step forward and then two steps back - always an obstacle in my path to good health. Then, at last, it dawned on me that these obstacles were my life.”
“Having a chronic illness is a very emotional thing. You grieve, you feel sorrow. But you cannot stay there. You recognize that, yes, you’re justified for feeling that way, but to stay there would rob you of the years you’ve got. You can be useful, you can get things done, although not the same things that you did before. You still can do things and you still can enjoy plenty.”

Taking Control
Chronic illness often requires you to release control of certain parts of your life. It is normal to feel angry because you no longer have as much self-mastery. But it is possible to find new ways to regain a feeling of control.

Control through knowledge
“I don’t like being sick, but I deal with what I’m able to deal with. I can’t change the fact that I have it, but I can see to it that I know as much as possible about my condition so I can take care of myself. I try to be very careful about avoiding exposures, taking my supplements, eating the right kinds of food, exercising as much as I can, and getting plenty of sleep at night. The rest I leave in God’s hands and don’t worry about.” 
“You never get over grief or pain. You recognize it but you move past it. Sometimes you get back into it. Then, you recognize it and you move past it again. If you dwell in it, you sink lower and lower, and all there is, is the pain. What helped me get past my grief and start coming up for air was the fact that I am curious about a lot of things. I wanted to know more about my illness.” 

Control through positive thinking
“I decided to find things I can do - things I am good at doing.” 
“Always fight. Sometimes I take a deep breath, sometimes I take a time out, but I know that I’m going to continue just as long as I can. I just don’t give up. I think that people who are tenacious manage to rise above the disability better than others do. People need to look at what they can do, and be happy, because it could be a lot worse. A lot of them can still do something.” 
“When I have a bad spell, I use the theory ‘nothing lasts forever.’ This will be over soon. I’ll get through it and won’t have to come back to this moment again.” 
“History is full of examples of people with disabilities who have gone on to accomplish amazing feats.”

Control through problem solving
“I figured out the things in my house that were making me sick and eliminated them wherever possible.  I have created an oasis in my bedroom so that I can get some healing rest.”

Benefiting from contact with others
“This illness has brought us closer together. My friend has shown me the power of his love by the way he has cared for me. I appreciate him immensely.”
“You cannot receive more than you give. It’s a rule of the universe. You can call it religion or whatever you want to call it. You can call it God; you can call it nature. You cannot receive more than you give”

Support networks
People are often relieved to learn about others who have experienced what they have gone through. Support groups help, as do informal networks. 

“I didn’t know what I had. I just realized that I was becoming sensitive to the world around me. I used to wonder, ’Is there anyone else in the world who has these problems? Am I the only one?’ Finally, after seeing many practitioners, I found a name for what I was experiencing. I thought, ‘If there is a name for this and people study it, there must be other people who have it, too.’ ”
“I found a support group back home. It meets once a month at a local church. I find that being able to sit down with other people who deal with the exact things I do, really helps. I can’t keep it all inside. I know that keeping my feelings inside, will only make things worse. In a support group I don’t feel self-conscious when I talk about my illness, because these people understand.”
“I have friends with whom I share deep connections. They know that I’m not well and if I say I can’t do something, then I can’t do it and it’s OK.”
“When I became chemically sensitive, I had to say home most of the time in my controlled environment in order to stay well.  After becoming isolated and lonely, I joined a support group and now I have a list of people with similar problems that I can call for understanding, support, information or just to chat.” 

Independence is highly valued in our culture. Those with chronic illnesses may face the challenge of learning how to ask for help, and being able to accept it.  

Self-assertion
”I used to play cards with a group every week.  When I became ‘sensitive’, I stopped playing.  A friend from the group was concerned about me and wanted to know why I wasn’t playing anymore.  After telling her about my condition, she was incredibly supportive and talked to the other members about the special accommodations I would need.  Now when we play nobody wears any fragrance and we play at my house because It is a safe environment for me. I was amazed at how much these people wanted to help. I will not hesitate next time I need to ask for support.”  
“When I became chemically sensitive, I told my boss that I would require specific accommodations. He was initially supportive, but kept promising that he would look into it. To overcome his inertia, I had him call a meeting with my colleagues, so that I could explain my needs. They were mostly supportive but I didn’t feel that they truly understood what I needed.  So I kept sending them reminders not to wear fragrance and articles to read about a growing number of people who were sensitive to chemicals.  It took a lot of education on my part, but I kept communicating my needs.”  Since I was a valuable part of the team, my boss eventually agreed to let me work from home part of the time and implemented a fragrance-free policy on the days I was in the office.  It’s been a difficult adjustment, but keeping my job has been a blessing for me.”

Accepting your physical limitations
“In the beginning I used to hide my condition. I used to get upset and angry when I got around people with a lot of fragrances that I could have told them not to use. I had to overcome my initial embarrassment, but I’ve learned to accept myself for who I am and communicate my needs to others. I have become more at peace with myself as the years have gone by. I’ve learned that you can’t be vain with this illness.”
“I’ve never had a long-term relationship. Most of my friends are married and have children. I get sad about that. It’s hard, but I know there is someone out there who will accept me as I am. I didn’t even accept myself until a few years ago. I had to learn that it’s okay to have this illness. There’s so much more to me than this disease.”

Getting in tune with yourself
“I close the door and I meditate. It comes from inside, from my heart. From that which we have already been given. I take deep breaths and relax and allow this innerness to come out.“
“I’m doing all the things that are soul fulfilling. I do things that give me the most pleasure. I feel like I’ve gone back to basics. I’m in tune with myself.”

Expressing feelings
You may feel angry at your illness, your body, yourself, at health care providers, or family and friends. This is common and normal. It is a challenge to express these feelings in ways that don’t hurt those around you.  

“I’ve struggled with anger in my life because I never want to hurt another person. I’m not a screamer, instead I play the piano.” 
“Sometimes I protect myself mentally with an image of a shield on the outside. If I am really feeling overwhelmed, I do that many times, until I’m strong enough to open up again.” 
“I think you have to allow yourself to have a pity party and then cut it out. You have to cry. You can’t be tough all the time. You can’t deny the feelings. They’re real but you don’t want to spend all your time crying. It just makes your eyes puffy after awhile, anyway.” 
Just as expressing anger and pain helps, so does expressing positive emotions and doing pleasurable activities. Humor, faith, hope, and creativity all have great value in healing."
“Some things about this condition are so absurd that they’re actually funny!  I have learned to laugh at some of the strange things we have to do to avoid getting exposed.”
“Just knowing I’m not alone helps. It’s just a feeling. Believe me, that feeling isn’t there all the time. I cried last night because I felt so sick, but my faith helped me through.”
“Adversity is not the time to look at the negative. It’s a learning experience. Hold onto your faith, whatever it is. If you are rooted in faith you’ll be OK. It’s not the end of the world. There are many possibilities. It may seem impossible, but every day is a new day of possibilities.” 
“I tried to bargain with God. No matter how much I bargained, God wouldn’t listen, or at least that’s what I thought. But I see that my illness has given me new goals in life. Goals and dreams that I never would have imagined before. Maybe this is God’s answer to me.”
“Hope is born out of despair. You have to take risks. When you take risks, courage grows. That’s what I’ve had to do. I’ve relied on my faith. It speaks to my spirit, and it helps me to cope better.” 
“This condition is very difficult to live with, but it’s not the end of the world. People with this condition are still living productive, interesting and rewarding lives.”

Helping yourself through activity
“Since I’m sick a lot,  I don’t get to spend as much time with my sons as I’d like, so I write them letters. I tell them how I feel and that I love them. I give them advice and hope that if they ever have to face something like this, they can learn from me.” 
“When I am strong enough and have enough energy to do something, I make crafts. I need something to do with my hands, so I work on craft projects for as long as I can. This is my way of fighting the disease. No one can take this away from me.”
“I like going into nature and taking pictures. Whether it’s of me in nature, or nature on its own. I feel that it is one way I can express myself.”
“I like to write and on my worst days I try to journal what I am experiencing.  It helps me get in touch with the pain.  Later on, I use this material to write articles about environmental illness.  I have had some articles published in newsletters, magazines and newspapers.  Getting published makes me feel great, because I know I am helping to spread the word.”

Personal growth through adversity
Many people find life meaningful despite chronic illness. They realize that the road towards personal growth is difficult, yet the journey is rewarding. The changes they face bring unexpected opportunities. Positive thinking plays a big part in being able to benefit from their experiences.

“Once in my life I had a beautiful painting of water. It showed where the edge of the water was coming up to the beach. As I saw out through the water into the very center of the picture, there was a calm area where the sun shone down on it. It was beautiful. Before reaching the calm area, it was rough. From the point where I visually entered the water, the waves got rougher as I moved toward the center. That’s my analogy for life. Now I’m at a peaceful place, but there have been times when I felt as though I was barely treading water. It’s frustrating when I’m back in the turbulence. Sometimes it seems like my body is working against me. But I’ve been through it before, so I know I can do it again if I have to.”
“My life is not so bad. I wouldn’t wish it on anyone, but it’s not that bad. This illness is just one facet of my life. I’ve learned to love people, and people love me. Illness is not the main factor. I can’t have tunnel vision. I’ve been there before, but I can’t stay there for long.”
“I can never work again. I was in the Navy, and having to give up that uniform was one of the saddest things I’ve had to go through. I cried a lot. I miss it. I loved serving my country. It was a very emotional experience for me to give up my work. On the other hand, now I can spend more time with my family.”
My granddaughter prayed, ’God don’t let my grandmother die. Just please make her like she used to be so we can run and play.’ I can’t run and play anymore. That was heartbreaking to realize. My body has changed. We do other things now. Because of this illness, I actually think I am a better grandmother than I used to be.”
“ When you have a disability, you dwell on what you can do, and not on what you can’t. That’s my gospel.”
“You have to have a good outlook, a good sense of humor, some curiosity. That combination can create good coping skills.”
“I just do the best I can today and I’ll deal with tomorrow, tomorrow. I just take what I’m given and deal with it. I sound like I have it all together, but I have my days and that’s OK.”
“I know a woman who is completely bedridden; she can’t even dial a phone. But she can punch a button that gives her the operator and she uses a wonderful speaker phone and she is the jolliest, happiest person I have ever talked to in my life. She calls people and people call her and she is still going, still giving of herself. All she has now is her voice, and she’s using it. She is a powerful person. When I think of her I think, ’You better get out there and keep working, kid.’ There are so many people with chronic illnesses who are just amazing.“
“I feel like life has given me lemons, so I’m going to make lemonade. I try to look for the beauty in everything. Even when it rains, I look for the rainbows.”

Finding Purpose
“On my good days I am filled with a sense of purpose.  Maybe my role is to educate people about the dangers of our current lifestyle.”  “I am a canary in a coal mine – it’s people like me that are here to bring about change.”

Advocacy
With a condition like Chemical Sensitivity, you begin to realize how connected we are to each other and the environment.  We are experiencing the effects of environmental destruction first hand.  Some of us have joined environmental groups and joined the struggle to educate our leaders about their destructive policies.  Others have joined the fight  to gain recognition and accommodations for our disability.  It is true that every disadvantaged group has had to fight for their rights.  You can look around and see the results that some dedicated individuals have helped to achieve.  Some examples of this are our public non-smoking policies, wheelchair ramps in most buildings and an increased number of women and minorities in management positions. History is full of great examples in which one person made a huge difference.

Ten Resolutions For Dealing With Chronic Illness

 Original version by Brian Grady, Ph.D. www.tenresolutions.org

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